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TodayVBS is over , we had the last night of VBS . It was so nice how they ended the week . We had a ice cream social and got to view pictures of the childern from the week on a power point slideshow . It was such beautiful and happy faces !! This week was so rewarding for myself I enjoyed our parents bible study time and so enjoyed watching Destiny be so independent . She really had a blast ! Erwin got to attend 2 of the nights also with us this week - he to thought it was blessing for our family . Destiny , loved getting home and showing us all her crafts she had done this week - and we had to make sure and hang them all up on the bullention board . SHe also received a Read to Me bible as a gift from Calvary . One of my favortives was her picture frame she made - she said they could decorate it and write anything they wanted to . She did hearts with the words : I love God !! Destiny will also be attending Mother's Day out for Special Needs for the month of July at Calvary every Tuesday . I was asked to work in the nusery . Everything works out in God's plans . I was worried about leaving Destiny for a full day - cause of the potty time . But , now I will still be in the church if I am needed .
TodaySecond night of VBS - brought tears to my eyes . I was such a proud Mommy watching my little girl last night . All the kids and parnets went in the stage area last night . Destiny held the bible for the bible pledge and also went up front during cheer time and did the HERO cheer . I was so shocked - Destiny is really coming out of her shell . It was an memorable night for me . *I finally got some pictures loaded today - so hope you'll take a minute & check them out and also leave us a comment !!
TodaySecond night of VBS - brought tears to my eyes . I was such a proud Mommy watching my little girl last night . All the kids and parnets went in the stage area last night . Destiny held the bible for the bible pledge and also went up front during cheer time and did the HERO cheer . I was so shocked - Destiny is really coming out of her shell . It was an memorable night for me . *I finally got some pictures loaded today - so hope you'll take a minute & check them out and also leave us a comment !!
TodayLast night - was the first night of Special Needs vacation bible school at Calvary Baptist Church . Destiny , had such a great time . The whole 30 minute drive home - the radio or tv did not even get turned on . She was full of happiness and wanting to share all the details of her night. It brought me so much joy , knowing that she had a good time . She truly loves learning about God . I was so proud of her too , when she explained all about the necklace she had made A= Accept B= Believe C= Confess . And explain in detail what each meant . Then she told me that she got a prize for answering a question right . They asked her what did Joseph do after the angel came to him in is dreams . She said : he worshiped God ! It just brought tears of joy to know Destiny loves God with all her heart , she truley is "his child" . It was so nice for me to get to go to the parnets bible study too . I enjoyed meeting some new parnets and also enjoyed the bible study . We are both looking forward to the whole week of VBS ! Yesterday , we also went to the library - Destiny now has read a total of 128 books ! And still reading !!!
TodayWe got 2 exiciting calls this week !! The first one was from Canine Assistants . The have reviewed Destiny's application & her Dr.'s application and we had our first phone interview . The lady , said that Destiny was #1 on the waiting list for Louisiana !!! So , now it is just patinetly awaiting - them getting Destiny's sponser . Then we got our call from Catch a Dream with our trip dates . Destiny , will be leaving out on Sept. 19th for her hunting trip . It will be in Southwest Missouri in the Ozark Mountains . We will conitune to get more details as the trip gets closer . Destiny , also has read 115 books as of yesterday . She received her 100 book Summer Reading program cert. yesterday . She is conituning to read - since we still have awhole month ahead in the program left . She will be awarded her medal at the Summer Reading program party in August .
TodayDestiny , had her Well Visit Check-up today with her Dr. Everything checked up great ! She is doing really well lately . She got her Chicken Pox shot today . She also is doing really well with the Summer reading Program . She currently has read 50 books and is still working hard to reach her reading goal . She has set it high , so wish her luck !! She is enjoying all the reading - and I sure enjoy sitting and letting her read me a story . It is so rewarding to hear your child read -- and know that you have been the one that have taught them , such a great gift to have in life !!
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TodaySchool lessons are over !! Yesterday , we finished up all the needed lessons for grade 2 . And my little girl will be a big 3rd grader next Fall . We will be doing the ABecka Program . Destiny , is happy to have a break for the Summer . And we have alot of fun things planned to keep ourselves entertained all Summer . Today , was Destiny's Lung Apt . Her lung Dr. took her off her breathing treatment steriod medicine but , she still is on another type of medicine by breathing treatment . He also has some concerns on her swallowing - dry cough spells , and choking that has increased the last 2 weeks . So , we will have a Swallow Study performed yet again - and we have to go back to see her GI Dr. and GI Sugeron . We will go back again to the Lung Dr. in 3 months and discuss the tests and views from the other Dr.'s on what steps we need to take next .
TodayDestiny had her 8th birthday party this past Saturday . She had a Hannah Montana themed party and cake . She got alot of nice gifts and lot's of money . Thanks to all of our special family & friends that came over to be apart of her special 8th birthday party . It means the world to us !! Yesterday , was Mother's Day . I had a wonderful & special day spent with the 2 most important people in my life Destiny & Erwin made the day so special for me . I am so thankful God contuines to enrich my life with such wonderful memories !!!!
TodayOur precious little girl is "8" today ! What are blessing that is from God . We are so truley grateful for the last 8 wonderful & special years that we have had with Destiny . She is a true inspiration !! Yesterday , she & I had a Mommy & daughter lunch and shopping . And tonight we will be taking her out for dinner as a family . We will be having her big 8th b-day party next Saturday the 12th & we will be sure to update all about her special day .
TodayNew Hot Wheels ... Destiny , received her new set of wheels yesterday . She loves her new chair . She says it is so cool & comfortable . It is a permobil street with camo base and bubble-gum pink seating with the words Princess Monogrammed in Green on the seating back . She chose the design again for her chair herself . This chair reclines both full chair and back and feet reclines too . It has a light kit on it with flashers , turning signals , and head lights . It is so cool - as Destiny says . She is enjoying the new chair already going full force !! We plan to go this weekend to get her a new lisense plates and a few special things to go on her chair to personalize it a little more .
TodayOn Thursday we made the trip to Shriners for Destiny's 6 months check-up . We had X-Rays of her hips & back done again . The back scolosis is at a 75 degree curve now and hips the one hip is dislocated like we knew from the past & the other is starting to be dislocated . We had a meeting with 2 Dr.'s about Destiny's left foot to discuss options we may have . They first wanted to do the ankle cord sugery on it (but they said it - is to risky to do being she can not be put to sleep) . Then they discussed doing Botox on both the right abd left foot but , after them doing a few minutes of researching on it , (they have never done it on SMA patients and they feel it would be way to risky) , so our only option is casting both feet for 6 weeks (with every week having to go down there and take the cast off and recast) after 6 weeks then she would be fitted for afo's and would wear them 24-7 so the feet would have less a chance of dropping again . So , the Dr.'s said to wait 6 months think about it - and to see if the feet get any worse , or she starts having alot of pain then , we can make the choice of casting or not . The left foot is about 50% and the right at 40% . So , at least we do have an option if we need to go with it , it will be painful for Destiny - so we are praying that no new signs of changes with her feet occur within 6 months . We got our call last night , from the Changeller Ball lady , Ball will be beginning soon . They are still working on getting the teams together and coaches . Looks , like Erwin & I maybe coaches this year . We will know for sure later . Destiny , is so ready for the season to begin . She truley loves playing , she could care a less if the team wins the game or loses the game -- just as long as she gets to play !
TodayDestiny has a Shriners Apt. on - Thursday . Please , keep us in your prayers .
TodayDestiny , lost yet another tooth . And one is already coming in - in it's place . The tooth fairy brought her the DVD Cinderlla 3 .
TodayWe got a call last night that Destiny will get to go on a sooner dated Turkey hunt on April 6-7th . And then also get to go for the week trip in May . She is so excited about this earlier hunt !
TodayDestiny , attended her third Shiners Fishing torunment on Saturday . Her Daddy & a friend fished in it also , and placed 5th place out of 100 boats . It was a great day ! Today , we got some exicting news today !! Destiny's third chair has been approved and we hopet o have it sometime this month or April . It was custom designed , with Mossy Oak Camo for the base and hot pink for the seating . (Destiny's design) !
TodayDestiny had her Lung Dr. apt . last Thursday . We received her PFT results & we will have to have yet another PFT on her next visit . To compare the 2 and then go from there with what needs to be done . She has her MDA Dr. Apt. on the 6th of this Month . So , keep us in your prayers .
TodayDestiny , attended the childerns class during our special needs support group on Monday night for the third time . She "loves it" , she loves her teacher and everything about the ark as she refers to it as . What a blessing God has given to our family this semester with special needs support group . It has been thus far a very meaning full and special night of each week for our little family . And double wow - for us with Destiny going alone to class !!
TodayWe got the call tonight from our friend Greg . We are getting to go on a Turkey hunt for a week with Destiny and stay in a cabin like camp at a Ranch in Sanantio Texas . She is so - very exicted about it . She said "momma where are you going to put all my animal mounts at?" Her year of hunting looks very promising already Turkey hunting in May and her Catch a Dream hunt in Sept.
TodayOur news interview went great . We went to town afterwards , and 6 people came up and talked to us about the Stride & Ride . Yipee, the more we can spread the word the better ! We also got Destiny , signed up again for Changeller Ball this year we are so looking forward to it . We even found her a bat that she can acuatally hold & swing all by herself it is so light . We started back attending a Special Needs support group . The main reason for not going the last couple years was Destiny not wanting to go to the childerns class . Although , this they put her with the older kids and she went all by herself to class on Monday night . A very , very BIG step for her !!! I am so proud of her . When she came out of the class she was all smiles & talking up a storm about her time there and anixous for Monday to roll around again . We are gearing up for the Stride & Ride this Saturday . Destiny , is exicted she loves all the MDA events and loves getting to see all her MDA extended family .
TodayEverything lately has been going really good , for us & Destiny . She is beginning to change a little in her looks and personality . She is losing alot of the baby look , getting taller and slimmer . She still loves Art but a new passion is Singing too . We bought her the new American Idol PS2 game that comes along with the mic. she loves it ! Our little star in the making , lol ! Destiny & I will be appearing on our local channel 5 KALB news on Monday morning the 5th for an interview about the MDA Stride & Ride .
TodayWe are having a very nice week . My family (my Uncle & Aunt from Saudi came to our home last night to visit and met Destiny and Erwin for the first time . My couison (their daugther came also and her two little boys)they are from New Iberia . It was so nice to have seen them and for them to met Erwin and Destiny and I to met Trey & Pierre . They also brought my grandmother from Monroe to come and stay at our home with us for a week . Destiny , is really enjoying -- having her with us . Today , we also got Destiny's lift from the house .
TodayYesterday , we went and had a new wheelchair fitting . We are in the works of getting Destiny a new chair . It will be a total differnet style & seating system . More relclinging and reclining feet too . We are keeping the colors a secert though !(LOL)
TodayDestiny received her first deer killed deer mount today . She was so happy to finally get it . It turned out beautifully and we have hung it up with pride .
TodayWe had a great New Years , so very much we have had in 2006 to be thankful for . But , 2007 is off to a rough start . As of yesterday Destiny started showing signs of getting sick . She is feeling really bad today . Thus far all she has is a stuffy nose , headache , runny nose , and just feeling bad , very whiny , & weaker than norm. So , we called the Dr. he did not want Destiny getting out in this cold & very nasty rainy weather we are having today . So , he has called in some medicines and I will go pick them up this evening . Please , keep Destiny in your prayers . I have been sick , Haley , and Wyatt too this week so prayers for them too .
TodayThings have been going good lately . Destiny , has been having lot's of fun doing Christmas Family Gatherings , Christmas Crafts & Baking . She is so anxiuos for Christmas . We go for another Swallow Study on Friday . So , say a prayer for us with that . We got a call today from Catch A Dream Foundation they have granted Destiny a wish for a Whitetail Deer Hunt for September at a Ranch in Missiori . We all are so thrilled and grateful . Destiny , was so happy and for once speech-less . It will be sure an amazing trip for our family .
TodayDestiny , had a Pulmongist Appt. & Heart Appt. yesterday . She had a PF test with the Pulmongist and he set her up for a Swallow Study for this Tuesday and to discuss the G-tube sugery . Then we had the Heart Appt. she had a ECG , Echo , & had to be hooked up to a Heat Monitor for 24 hours . And she had CBC blood work performed and blood work to test Destiny for Thyriod Diease . As soon as all the results come in we come will have another appt. with the heart dr. It was a very stress-ful day . We are praying that , everything comes back good . *We also found out yesterday that Kim , my sister is having a little girl . And they plan to name her Ashlynn Kaye . Please , keep Destiny in your prayers .
TodayDestiny , was admitted on Monday morning to the hostipal with Phemonia in her right lung & fever . She was on IV antibotic , Iv fluids , Breathing Treatments , chest PT , and Bi-pap . Her O2 remained about 94 although she did get choked during the night and it went down to low 80's . It gave us a scare ! She was released yesterday . She has no fever but , still has the Phemoina . She is on 3 Brething Treatment medicines and 2 medicnes by mouth including all her regular medicine . We go back to the Dr . next Thursday for a recheck and to make sure all the Phemonia is gone . Please conitune to pray for Destiny a full recovery . *Also prayers for my neice Haley whom is in the hostipal with high fever and problems from her teeth sugery on Monday .
TodayDestiny is still really sick . Fever has been since Wednesday - and coughing has gotten alot worse . We will be going back to the Dr. in the morning for recheck and to see what we need to do . We pray we don't have to end up in PICU . We did get the Christmas outdoor lights and deco . up & our tree up and decorated too tonight . Destiny , said it was a MUST (lol) she started crying afraid that she would miss Christmas cause she is not getting well . It was so sad - but so sweet too . So , everything is up and beautiful for our little Princess . Please keep her in your prayers !!
TodayDestiny , is sick - went to the dr. yesterday morning . She is on medicines and breathing treatments . Hopefully , we caught it before it got to bad . She did have a good day yesterday , but rought night last night . We are surely praying that our little sugar plum gets well fast . We are thankful though , we get to be home with her for Thanksgiving . I am so thankful for so many things this year - a am really one truly blessed Mommy . Wishing everyone a very wonderful Thanksgiving Day !!
TodayDestiny , had yet another great hunting trip this past Friday - Sunday at Camp Minden in Shreveport . We again met alot of new friends , and got to see some of the old ones too . She went to the shooting range on Friday and got to shoot her 22- shot gun . She had alot of fun doing so . After , shooting we had lunch with everyone . Then Greg & us all went to the Bass Pro Shop where Destiny was VIP for the day . She was treated to a shopping spree . She got $250 in stuff . She was so tickled ! Saturday , she woke-up at 1 am anxious to go , hunting and we did not have to leave for the hunt till 3 am . Hunting is forsure in her blood ! (LOL) Saturday she got yet another doe . She was so happy and exicted ! A 8 point buck also walked out on her but she could not get a shot on him . At noon we had a big cookout and that night a big fish fry at the fire station in Minden . Sunday was yet another great day and another cookout too . Destiny got to met the directors son , Jason who is also 7 and a little girl Anna who was along with her Mom and her Moms patient . She enjoyed playing with the kids . Everyone was so nice to her . Sunday , she was in the Shrev. newspaper - and Sunday night was on the Shrev. news channel . Destiny , also won a deer cleaning knife set in the silent auction on Sunday . It was yet another memorable weekend , full of happiness and lot's of happy tears !! We can't wait till her next hunting trip - coming up !!
TodayMonday , Destiny had an Eye Apt. They did serveral tests on her . And found out that she has very high pressure at 27 and that some of her Optic Nerve is being damaged due to her condition . She now has to wear little cute glasses all the time . We will have to stay on top of the Optic Nerve problem & watch her pressure very carefully so we have her next apt . in 6 months .
TodayDestiny went on her wish hunt this weekend . It was one of the most wonderful experienecs for our whole family . Destiny , was the only little girl on the trip - so you can just image the royal treatment she got . She killed a 13 pound deer Sat. evening . They are mounting it for her ! She also got a pink 22 shot gun presented to her !! It was truly a amazing time something we all will cherish for a lifetime .
TodayDestiny , had a great Halloween hoilday . We went to a MDA Halloween party for the MDA kids at her MDA Dr.'s church in Monroe . It was alot of fun . Destiny , won browines in the cake walk and entered a pie eating contest . We had a Halloween party here at the house with a few family & friends . Roasted hot dogs , had lots of goodies , and craved pumpkins with the kids. Halloween , night we went trick-or-treating at family & friends houses . Destiny , was so adorable . She was a little bumble bee this year !
TodayDestiny , ran a low grade fever yesterday and last night and was really whiny . It was from the Flu Shout I am sure . Thankfully , though today she is make in full swing and feeling great .
TodayDestiny , got her Flu Shot yesterday . So , hopefully by keeping her indoors , out of the cold , and away for any bad germs we will have yet another safe & heathly Winter . We also found out that - the insurance company is working on getting the hostipal bed and inside lift approved . Hopefully , we will have good news with all that .
TodayWe got our SMA 07 calender in the mail today . It is so awesome -- words can not even express the feeling we got when looking at all our friends on each months page . Destiny - had such a good time showing her Daddy all her friends . We will surely enjoy the calender this coming year .
TodayDestiny, is getting a hunting trip wish granted! Both Erwin & Destiny are so thrilled !! For the last 2 years Erwin has hoped to bring Destiny deer hunting along with him. Since, a very young age, Destiny has been following her Daddy's footsteps (in her chair) she always watches her Daddy clean his deer and loves watching the sportsmen channel with him. She is her Daddy's little girl but more than that a little Tomboy. But, due to her weakness -- she cannot shot a gun & because of the cold she cannot get out. But, with the wish trip both of those details are being taken care of. Destiny, will get to use a device that holds the gun up for her and is moved by a joystick (just like her chair) and has a device on it that she breathes in and it shots . (so, awesome) and she will be hunting in a heated box stand! The wish trips are both in November. We will have all the details soon. All we do know is about the gun, stand, and that we will travel to the place, have lodging and all. Dreams continue to come true for our little family!
TodayDestiny's -- MDA apt. went good. The Doctor was really happy to hear that she has been well for such a long period of time. He wants Destiny to get a hospital bed, so she can start sleeping in it. To help tilt her head for breathing -- and help with her numbness and cramps in her legs during the sleep. Destiny also got modifications on her seating on her chair. We will be doing new seating with the wheelchair guy and her PT in December for a whole new seating system . (she has completely outgrown hers) she will get to keep her base of her wheelchair though being it is still in great working condition. We had a really nice week visiting with family during our stay in Monroe. Destiny, was spoiled as usual and enjoyed being with everyone.
TodayPlease , keep Erwin & his sister & brother in your prayers . One of Erwin's sisters lost her battle with Cancer .
TodayDestiny , was in the local MDA newsletter as one of the three MDA families that raised money in the "Be a Star" campaign for this years MDA telethon . We are so honored and so proud ! And we again thank all the companies and people that donated in her name .
TodayDestiny - is sick with a resiptatory infection and fever. We went in Tuesday morning at the first site of her coughing and getting sick . Hopefully , we have caught things in time and she will the infection wil not get a chance to get in the lungs . She had blood work done and was given one medicine and one antibotic . She is feeling a little chipper today although , the cough is still very wet and deep . Please , keep her in your prayers .
TodayOn September 9th , Destiny made a milestone ... On the 9th it was 2 years since Destiny had been admitted to the PICU for Phemonia . "YIPEE" . We truly are so very , very blessed ! We will contiune praying that she stays well . With Winter months fast heading our way we will be being very carefully to where we go & watching out to not be around anyone that is sick . Lately , Destiny has been doing great . She loves school she favortives for 2nd grade are still Math and Art . But , also now Reading . She is getting to be a little book worm . She enjoys watching movies , shopping , playing computer , playstation , board games , barbies , pollys , and dolls . She is very sassy and indepedent . She all around a wonderful and happy 7 year old little girl .
TodayThe 2006 MDA Telethon went wonderful. They raised a lot of money for Jerry's Kids. Our family had an interview with Mr. Neil on Monday at noon that went great, although there were many, many tears. It is still hard talking about our life with dealing with SMA. I don't think it will ever get easier. Destiny, as always was a little sweetheart on TV she smiled the whole time, she made silly faces, and even spoke . (what a proud Mommy I am) On Tuesday we got to go pickup our new wheelchair assebile vechicle and boy do we all love it! It is awesome ! It is a 2007 uplander it came straight of the line at Chev. with only 20 miles on it? It is Gold Mist in color with cashmere interior , 6 disc CD changer, onstar, hands free phone, entervan 11 conversion, power opening door, power ramp, and kneeling system. It is going to make life a lot easy on us. It has been much needed for along time coming.
TodayWe are of today to Monroe for the 2006 MDA telethon . Destiny , will appear on TV this evening and Monday . Her interview is scheduled for Monday at noon . She has worked hard and raised over 500 dollars this year for the telethon . We will be staying in a Hotel for 2 night and not coming home till Tuesday evening , because we are going to be picking up our new vechicle on Tuesday . Can't wait to share our Labor weekend update when we get back and all the details on our new ride . * HAPPY LABOR DAY !
TodayOn Friday Destiny went to the "Fill the Boots" with our local Alexandria Firemen . She was interviewed by both our local newspaper & our local news . Friday night we aired on 3 different times . And Saturday Destiny was in the paper .
TodayGot the call usterday that our vechicle is completly done . And will be shipped directly from the main Chev. plant soon . We are so "ready" for it . We are counting down the weeks !!
TodayOur hearts & prayers go out to the Coggin family . Little Grace lost her battle with SMA . * I pray that a cure is found for SMA SOON !!
TodayAlot going on around here for us . We finally are in the works of getting a new vecicle (may I add that it is fully assebile for Destiny & her chair) no more lifting her or the chair in & out . She will be able to drive in and out all by herself . It should be in - in about 4 weeks . We are so ANXIOUS & READY FOR IT !!! I will be sure to post all the details when we get it . School lessons started today . Destiny , is even more ready to learn this year than years before . She is getting so big and so smart . She has such a ready to learn and what to learn more attuide . She is a BIG 2nd GRADER this year . My baby is growing up ! We have a BIG & IMPORTANT DR. VISIT next week . I am so nervous about it , it is on a little of everything . Her spine , heart , hips , and foot . PLEASE KEEP US IN YOUR THOUGHTS AND PRAYERS . Everything else is going smoothly we had a wonderful Summer and looking forward to a GREAT FALL . Destiny will be busy , busy this month doing boot drives with the Firemen & then next month we do the MDA telethon . Thank everyone that contiunes to check in with us and pray for Destiny . We love you all !
TodayDestiny's team wond 1st place in All-Stars games . They got Trophies & passes to Fun Zone . We enjoyed our second year playing Changeller Ball .
TodayTake me out to the Ball Game ... Destiny, was one of 4 from her team that got picked for All-Stars . On Friday night we attended the World Series Ball Banquet . Saturday night was our first Ball game for All-Stars we lost 12-9 then Sunday night was our second game we won 17-5 . So , Monday night will be the last game to break the tie and to place the teams in 1st and 2nd places . Wish us Luck !
TodayVacation was lot's of fun! We went to Prattville Alabama to stay and visit with Erwin's Aunt. We went to the Montogermy Zoo and the Mann Museum , Atlanta Georgia to the World's Largest Aquarium, and to Gulf Shore's. In between all that we did lot's of shopping too. Destiny, has been resting up this week. The trip tired her a lot. Tonight starts our first practice for All-stars. Destiny, is really excited only 4 children from her team got picked and she was one of them.
TodayDestiny , finally got over the stuffy nose and allergies . Thankful for that ! She has been enjoying the Summer staying busy with having fun and being a wild little 7 year old . She is a spoiled rotten spit-fire !! Our fourth of July went great , Destiny got overly spoiled my her Daddy with all the fireworks he boought her . They went shopping without Mommy for them , so they spent lot's of money of course . She has always loved fireworks and never has been scared of them , we enjoyed watching her face as the big ones were popped ! She was so HAPPY ! We are counting down the days till Vacation . Friday will be Erwin's last day at work and he is off then we leave out Tuesday !! Destiny , has a dentist apt . on Monday for her regular yearly check-up . So , wish us luck on that . Hope everyone is enjoying their Summer !! ** Prayers needed for our friends Mr. Neal who had a Stroke on Monday . ** Prayers needed for our very close friends Theron , Stef , & Wyatt whom were in yet another very bad car acciendent yesterday evening .
TodayDestiny has been a little sick since Sunday evening . She is congested , stuffy nose , & fever off & on . She is still happy & outgoing altough late in the afternoons she gets whiny and feeling worse . She is taking medicines & breathing treatments we hope that she soon gets better . Even though this is her upper respiratory stuff acting up due to allergies , it still is always scary with her being sick . So , keep us in your thoughts and prayers PLEASE .
TodayI have some very sad news to report - Destiny's puppy Wishes got lose and got ran over this morning on our HWY & got hit and passed away . We all will feel a great lose , for Wishes was a special little puppy to us all . Destiny , is accepting it ok . We will not be getting any other dogs now , till Destiny receives her Service Dog . It is just to hard for Destiny to get around other animals like small dogs and kittens in her chair . So , for now we will just love our bird and fish . ** Special Prayers for the Jason Belgard & family , Jason's daughter was in a car accident and got killed on Thursday .
TodayToday , Destiny received a VERY SPECIAL package in the mail today . It will be one that we will treasure forever . Today , Destiny got her Cole's Quilt . It is a organization that hand cross-stitches and quilts for childern with SMA . In memory of Cole Webb another little boy - some of you that read Destiny's guestbook often saw our post about Cole's passing . Destiny's quilt is breath taking and every piece of the quilt fits Destiny's personailty to a tee . It is big enough to fit on her twin size bed but , we have chosen to get in framed in a shadow box (we will hang somewhere so everyone can view it without it ever getting damaged) . The backing is pinks , purples , yellow , and all light colors / with flowers & fairies everywhere . She has 16 blocks that all have been stiched by different people all over the world . I will do my best to describe each sqauare : a little angel holding a doll with the name Destiny Hope under it , little girl praying with God loves me , 6 little fairies with name Destiny Hope , little angel with teddy bear with phrase its not how deep the sea its not how wide the sky its how sweet the time from hello to goodbye , big dragonfly , cherub with the name Hope , heart hand and house , little angel girl with pony , Destiny Hope with unicorn , Destiny Hope with 2 dragonflies with flowers , yellow fairy with Destiny , green fairy with Destiny , purple fairy with destiny , fairy with flower , flower with Destiny Hope and word Love , and a poem I had written that is on her poem page on this site with her date of birth below it . I want to say a special thanks for this wonderful gift to Cole's Quilts Organization , Kristin Webb ( a wonderful Mother) Cole Webb (your precious face will be in our hearts and memory forever) Linda Zuroff (Aunt Linny) , and all the many stichers that worked on Destiny's quilt . We are so honored !!! "Destiny teared up today when she saw her quilt , she has known about it for over a year now and was so exicted" . **SMA is the #1 genetic killer of childern . 1 in every 40 people carry the gene . 1 in every 6,000 baby is born with SMA . THERE IS NO CURE ! ** One day we pray we have our cure !!!
TodayIt has been a GREAT NIGHT !! We had a ball game tonight & ball picutres . Destiny , hit a HOME RUN tonight the score for our team was 1-4 . Which means , Destiny was the only one to score a home run & point for their team . Yes * we are some very proud parents tonight !!! She also learn a new throwing style she runs then spins then throws !! (LOL) it is to CUTE ! It is so awesome seeing Destiny play ball she truly loves it , the whole time she is at pratice & at games she is glowing . We also finally got the report back from her PFT & Sleep Study that was done in March . The Lung Dr. has called in new setting for her bi-pap , and we will be getting a new apt . for further details about the results .
TodayHappy Mother's Day to Me ! I am so blessed for many reasons - that God gave my a chance to bare a child . That I got my little girl (what both Erwin and I wanted a precious little girl) . That we as a family are battling the DX of SMA as a team & not giving up Hope . That Destiny is not only the smartest , cutest , and most beautiful child but , she is all MI NE . That God has blessed me with yet another Mother's Day with my little girl . "8" wonderful Mother's Day celebrated with Destiny what a blessing in it self . So , on Mother's Day no gift , card , or eating out @ at fancy resterant would ever come close to being anywhere close to the wonderful blessing I have already been blessed with being a Mother !!!
TodayDestiny - had a wonderful birthday party yesterday . It was Polly Pocket themed (the cake turned out beautifully) ! We had close family & friends at the party here at home . Destiny , enjoyed her special day and got alot of nice things . **Prayers for our friend Stef whom is back in the hostipal with some problems due to the wreck and sugery she already had .
TodayDestiny , had a great 7th birthday on Wednesday . On Thursday we left out for a MDA/Citgo event where Destiny was a guest of honor . We got to stay in a Hotel and Thursday night we went to a Banquet , it was so nice . Destiny , had been asked to do some artwork and it was auctioned off at the banquet - it went for $1000.00 dollars (WOW huh) ! Friday , was the annual MDA/Citgo golf torunment . It was nice . This made Destiny's 2nd year of attending the event . Today , is her birthday party day - Happy party day to you Des-a-Doodle !!
TodayI wanted to wish my precious daughter a very HAPPY "7TH" BIRTHDAY today !!! We have been so truly blessed with 7 years of memories , 7 years of laughter , and 7 years of hope . Destiny , contiunes to have her ups & downs like any other SMA child but - she contiunes to make the most of everyday and wakes each morning with a HUGE smile on her face . She always seems to find the joy in every little thing . I am so blessed today to be celebrating yet another birthday with her . We are celebrating her day by going to a painting place where you childern can paint pottery , plates , & things . Her party will be on Sunday this year she chose Polly Pocket themed deco . We are looking forward to yet another wonderful year with our little girl !!
TodayFirst ball game of the season ... Destiny had her frist ball game of the season last night . Her team won 4-2 . She is so happy and bubbly when she is on the field , I think she is for-sure a tom-boy in everyway . I asked her yesterday , if she wanted to join the cheer team she replied saying "Mom , I like cheering but , that is just not my thing" (LOL) it was so cute she would rather have a ball or fishing pole in her hands !! I really think Changeller Ball is wonderful for her she gets to be around alot of special kids , and on each team there are 2 wheelchair players , which is awesome for her to see other little kids like her . **GO DES** you rock !!
TodayPrayers going out for the Tyson family today during their time of loss . We all will hold the memories of Uncle Howard forever deep in our hearts !
Today"HAPPY BIRTHDAY TODAY" TO THE BEST HUSAND , BEST FRIEND & DADDY ANY MAN COULD ME !!! We love you Erwin , and hope that today was wonderful in everyway for you . Today , we had our family & friends over for Erwin's birthday party/cake & Easter cookout/Egg hunt . We all enjoyed the day being with the ones we love .
Today**FIRST REAL HAIRCUT** !! Destiny , had her very first real haircut today . At 2 she has bangs cut & at ages 3-6 she had slight inch trims . Today , she got 3 inches cut . Not , that you can even tell her hair was cut !! (LOL) it is so long it still touches her bottom , but she now no longer sits on it . (LOL) Three inches was all that needed to be cut off (Daddy was thankful for that) .
TodayPlease keep the following in your prayers .. My Sister Kim - has been really sick since Monday on Wednesday she went to the ER and was hooked to IV she was complety dehydrated , and has a serve stomach virus . She is home today on Medicinces and Pain med.s and can not return to work for a week . Also my step-daughter Lori has the same virus and has been sick since Tuesday . (although she was able to go back to school today and is feeling better) . Destiny , started a dry cough today & she not feeling to well . We are keeping our fingers crossed that it is just a allergy and sinus problem and it will not lead to more .
TodayYesterday , we attended The Shriners Car Show . Destiny , was a guest there . She loved looking at the cars and the Shriners were all so , sweet to our family . After , our family went on stage & I gave a speech they presented Destiny with a T-shirt & Teddy Bear . We love supporting every organization that has helped and contiunes to help us during our journey y with SMA . It not only is great to support , but also great that we are spreading the awareness about SMA which hopefully is getting us that much closer to our cure one day .
TodayYesterday , evening Destiny had her first ball practice of the season . She enjoyed meeting so of her new team-mates and seeing some of her old team-mates from last season again . She practiced really good , she has gotten alot better with her throwing - she is so cute she gets a running start in her chair and then throws the ball . Her favortive is batting she loves to bat and then zoom to the bases . She giggles the whole time ! It is so awesome for her to play changeller ball , she gets to enjoy playing ball , be around other special kids , and both Erwin & I love seeing her interact with others . It is sure to be a great Ball Season !
Today*** Please say a special prayer for our little friend Kaitlin - who leaves today to be admitted in the hostipal and will be having a very serious sugery on Tuesday . Pray that Kaitlin makes in through the sugery safely & her recover goes smoothly . Also pray for strength for her Mommy & Daddy & grandparents . And understanding prayers for her little brother . "Little angel Kaitlin we are praying for you sweetheart" !
TodayDestiny , went to see the eye dr. yesterday . She is having some senstive again with her eyes . The dr. gave her some mediciaided eye drops to use everynight . Then she goes back in May for some tests to see if she needs glasses again .
TodayOkay - everyone hold on to their seats ... We got to answer the big question tonight from Destiny . She asked , "Mommy : where do babies come from" . I should have known that question was going to arise soon . The last several weeks she has been playing baby-dolls & acting out the Mommy role with her babies . She also is really big into her barbies (we have had all the barbies out , barbie car , & barbie house since last week). So , I explained the best I could about her question . I have always been honest and upfront with her about life and things . But , boy was I not prepared for that one , at least not yet ! (LOL)
TodayJust wanted to BRAG a little . Destiny , is doing great with her school lessons . She is learning to teall time now & the BIG NEWS she is mastering the world of READING ! I am so very proud of her , she contiunes to amaze me !!!
TodayHAPPY 7TH ANNISVERSARY ~ to my wonderful husand Erwin . I love you more & more everyday . We have sure came along way ! Even though sometimes often worried does life ever get easier , we seem to always pull together though it all instead of apart . I thank you for the most memorable & special last 7 years . You make me whole !!
TodayDestiny's. Apt. went well. She had her PFT we will receive the results from that on our next apt. While there she was fitted for a new type of device for her BI-Pap. Her skin sensitivity has gotten worse & the BI-Pap masks kept breaking down her skin and made blisters. So, she was fitted for a nasal snap. The Sleep Study went good. She had a Slit study. She slept for couple hours with nothing, couple hours with O2, and the rest with BI-Pap. She go to use the nasal snap & did great with it, so we came home with 2 of them. The tech said, her setting on her own BI-Pap were 10/4 & Destiny showed during the Study that she could not tolerate those settings. She could do 8/4 though. On 10/4 Destiny, was hyper venting. The tech said that the Dr. reads his own reports & we should hear something from him soon about the Study results. The Tech did say that Destiny did just as good without the BI-Pap as with. So, that is GREAT! That means, being she has not been real sick her lung strength has remain at the same straight and they have not weaken. ** I sure pray we can keep, keeping her well !!
TodayWe are traveling to have PFT & a Sleep Study today & tonight in Baton Rouge . Wish us luck & prayers for us a safe trip . We will return home on Friday sometime . I will be sure to update soon as I can . Thank everyone for my birthday wishes & gifts yesterday !! A big thanks to all the family that spent the day with me . And a BIG thanks to my husand and Destiny (you make me so happy everyday - not just on my birthday and that is a wonderful gift anyday) !!
Today* Special prayers for our friend Katylin ! And birthday wishes to myself today , I plan to spend the day enjoying being a Mommy !!
Today* Prayers for my SMA buddies Aschdon & Micheal that are both sick and in the hostipal .
Today**Please pray for my neice Haley - who is very sick . She was rushed to the ER on Tuesday night with 104.7 fever . And taken back to her Dr. this morning with fever and a severe cough . The Dr. ordered X-rays and had blood work done . They think she may have Phemoina . The are suppose to hear back from the Dr. this evening , rahter or not she will be admitted to the hostipal .
TodayYesterday - we attended our second year at the Shriners Bass fishing torunment . Erwin , fished in it and placed in 15th place . Destiny , was one of the guest speakers for the event . She loved all the attention from the Shriner Men . We also got to met - a little boy with SMA 2 and 7 years old (how neat) he is not from our area , but his Mom and I exchanged numbers to get the kids and our families together soon at our house . Destiny - was real shy towards him & he towards her too . It was very cute watching them look at each other (what are the odds of meeting another child with SMA 2 and the same age) ! We thought it was awesome ! We will get to met back up with them - in April for the Shriners Easter celebration . "We can not wait" ! ** Prayers please - for my sister Kim whom was admitted to the hostipal yesterday evening , she is in alot of pain and real sick . So , please keep her in your thoughts .
TodayDestiny , is WELL ! She is back to her spunky and rotten old self !! We are happy to have the old Des. back . She only now has a very dry cough now . We are keeping our fingers crossed , hoping that Destiny stays on the good side , and is able to have some Mardi Gras fun this weekend . "LAISSEZ LES BON TEMPS ROULER" ! (let the good times roll)
TodayIt's looking like the Princess is FINALLY starting to get well. She has a slight cough now, not rattles or wheezing. Her O2 is back up. She still has a fever off and on, but they say fever is a sign of the body fighting things off, so we are making sure to still keep an eye on things but things are looking up again. We truly believe that without the power of prayer, support of our family & friends, Irwin & My will to never give up on Des. & one special little girls amazing HOPE for a new day we would not have made it through all of this without going to ICU. We fought this battle hard. The next several days -- we will remain taking it easy and staying home away from the winter germs and out of the cold weather. Hoping by the start of next week Des. is completely well and back to the normal routine. Thanks - again to all the Emails, Phone Calls, Mail, Gifts and Love you all continue to show Destiny. We appreciate you all !! And many prayers to all our SMA friends that are sick at this time. And special thoughts to all our SMA families that have lost their angels this winter.
TodayWe had a pretty , uneventful weekend . Stayed indoors trying to get Des. well and out of the chill weather we are having . Friday - Destiny did not even get out of bed she felt really bad , high fever still & coughing . Saturday - she got up and played for a little while she countiuned to run high fever , coughing , wet rattles , & whezzing . Sunday - she seemed to feel better finally got out of PJ's and wanted to get dressed fix her hair and get pretty . She a slight cough during the day . By night time she started running fever , rattling again , and coughing more . She also threw-up (due to muscas) . This morning thus far she is coughing only , but it is a very deep and wet rattling cough . She is starting to pick on things with her eating so that is better than nothing . We are doing lot's of breathing treatments , bi-pap and all the med.s . Today , we are going to wear the bi-pap during the day to help make sure her lungs are not collasping . We will see how today goes and then go in to see the Dr. in the morning if she is no better . PLEASE - keep her in your thoughts and prayers , we got to get her over this . It has been so long since she has been sick , that it is really scaring me to have to go to again to PICU . I know how bad it was a year and half ago for her to fight this junk off .
TodayWe had a really rough night last night , Destiny got about 3 hours of sleep . She coughed all night and ran high fever again . At 4 a.m. she started crying , I got up to comfort her and when I did she was pale , pale and had tremors really strong . We took her Pulse OX and it was 88 which scared both Erwin & I . We started breathing treatments and increased her Bi-Pap setting . It finally came up to 92 which still is not very good , but at least we got it up in the 90's . I listened to her chest and sounds like , is has a little whezzing going on . This morning , is finally is trying to eat . We are just praying and taking this all minute by minute . The only things that seem to comfort her - are cuddling & her bathtime . We know that right now - home is the best place for her . ALthough , the thought of going into PICU is getting closer in thought . We pray that today she has a better day and a more restful nights rest tonight . Please , keeep the prayers coming . Thanks - to all of you that have emailed , called , or signed her guestbooks . I helps to know we have all of you to turn too . I will try my best to keep you all up to date on Destiny . *Thank you Ms. Linda Poole - for the big purple Elephant you mailed Destiny ! She loves it !!!
TodayWe need your prayers "PLEASE" ! As you all know it has been a year and half since our Destiny has been sick . Well , as of yesterday we are battling the sickness ! And we need your prayers !! On , Wednesday night Destiny had a stuffy nose by bedtime she was running high fever and coughing . So , Thursday morning we got up and headed straight to the Dr.'s office . She was tested for Strep & Mono thankfully she has neither . But , is has a bad cold and the flu . What are the chances for her getting the flu being she has had her flu shot (well she has it) . She also has a red , red thoart . She is on liquids to help the thoart and 3 medicines on top of the 7 we already take and the 2 breathing treatments are upped too . She did not sleep well last night , coughing and running high fever most of the night . On top of that , her new bi-pap mask broke down her skin again , so Daddy is off to purchase a new gel mask for comfortable and easy on the skin . Her O2 is low , so we are bi-paping 24 hours a day today . She is not up to her normal spirits or eating , so that is a scare sign for us . She always gets that way when she is really , sick . Just please keep us in your prayers and we will be sure to update as things go on . Love and Blessing to all and lot's of prayers for my baby-girl !!!
TodayBALL SEASON HERE WE COME !!! Today , we went and registered Destiny for Challenge Tee Ball. This will make Destiny's second year. She is really excited about it! This year they will each get two uniforms and also get to play in the Dixie Leagues opening season, have professional ball pictures taken, & play at our towns new complex .
TodayDestiny , received all her papers today for MDA Summer Camp . She was so very happy and exicted ! As soon as we opened the package she wanted me to get all the papers signed and mailed back out . Now , let the shopping begin !! Destiny - will get to attend her first little real Prom at camp !!! So , we will have our eyes open for the perfect little pink dress !!!!
TodayWe heard for the Pulmongist on Friday - we will have Destiny's PFT & Sleep Study on March 23rd - 24th .
Today*** Please say a prayer for our Friends Stefanie , Ms. Janice , & Wyatt . They all three were in a bad car wreck yesterday evening . I eighteen wheeler hit them . All three of them were taken to the ER . Wyatt - is doing ok (he had lot's of cuts , brusies , black eye , and bursted lip & nose . Stefanie , was sent to LSUA Medical Center in Shreveport she will be having sugery on her ankle , broke leg , and rod and pins placed in her hip bone , Ms. Janice had sugery on her broken leg last night . Many prayers are needed for all three of them , Theron , Mr. Herley , all the family , and there close friends . **It will take lot's of prayers to everyone through this .
TodayWell - we did not get to go to have Destiny's Sleep Study or Lung tests yesterday . We are having problems with Destiny's Bi-Pap mask , and have to go Tuesday to have a refitting for a new one (once again) . On top of that we also have to go and get a Echo performed on Destiny's heart again . So , the Lung Dr. is rescheduling Destiny's apt . to come to Baton Rouge for either month of Feb. or March . It will all work out , I am sure in time . Destiny - is doing really well still has not gotten sick . We are really working hard on keeping her happy and healthy ! And everything that we are doing sure seems to be working . (We are blessed) ! She is growing -growing and changing it seems each day . Her personailty , will probaly always be sweet , caring , and such a loving one . Although , she has finally broken out of alot of her shyness - is a little spit-fire (alot like her Daddy) and she is very funny , silly & loves to be center of attention (alot like Mommy) . We have alot of wonderful memories and we have are praying that we have many-many one memories to come .
TodayYet , another child with SMA has earned his wings yeterday . Little "Timmy" - may you dance with the angels and play with little Payton . My heart aches for all the parnets whom's childern have lost their battles with SMA . My heart also aches of the unknown for my little girl . SMA is a horrible diease and I pray that all of us living with the DX of SMA for our childern we one day have a cure .
TodayPrayers and caring thoughts going out to one of our SMA families (The Freedman's) during their loss with SMA . May little Payton dance with the angels .
TodayDestiny and Mr. Bear along with 2 other of Destiny's bear friends had a Beat Tea-Party yesterday . It was so cute watching Destiny have this tea-party ! She is a doll as always and each day brings me more & more joy !
TodayDestiny's Guest finally arrived yesterday - his name is Mr. Bear !!! Mr. Bear , is a little bear that is making his travels for a week with many of the kiddo's from our SMA Support group . The kids get to have him for awhole week , Mr. Bear comes with a jornal to write his daily activites in . We also will have to buy him some sourviers from Louisiana . Destiny , was so tickled yesterday when we opened his box . I am sure the week will bring lot's of fun with Mr. Bear . Also , yesterday Destiny's chair got many modications . Her chair got new arm-rests , 4 new tires , new swing away joystick , new reclining switch & a nice new foot-rest . We hope that everyone is doing good & staying warm . Blessing to everyone !
TodayDestiny , has no more fever today !! Her gums have seemed to calm down from giving her the fits some too . We love her new improved Bi-Pap mask , she sleep wonderfully with it on again . Although , being it was new it broken down her skin on one cheek and formed a skin blister , but today it looks alot better , in 1-2 more days hopefully it will be complety healed . We will be having a special guest in our home for a week , he should be arriving to our home real soon . So , check back with us soon to find out who he is !
TodayWe finally received Destiny's new Bi-Pap mask & head harness today . We are thankfully , it finally got here . Destiny , is happy to have her "Pappy" back (her bi-pap mask) she knows how much better she rests with it . And Mommy will rest better too , I will not be keeping my eye on the Pulse OX machine all night . We are also happy to have it back , so we can start back with Destiny's daily naps with the Bi-Pap , exspecially on days like today - she is still running low grade fever , and her tooth is really giving her the devil , she has also been real tired and weak today .
TodayWell , we have been busy lately getting the house back to normal from all the hoildays . Destiny , is doing good . Although , she has been very tired & weak more than normal lately . Plus , she is finally cutting one of the bottom teeth she had lost . So - Mommy has had her hands full . But , oh how thankful I am that my hands are full !!
Today"HAPPY NEW YEAR TO EVERYONE FROM THE SANCHEZ FAMILY" !!! Our family had a very nice 2005 , even though we have had rough times during the past year . Most of our memories are good ones . So , for 2006 we pray that Destiny stays healthy and happy ! And that each day the scientist get closer to finding a cure for SMA .
TodayDestiny - was very tired and whiny yesterday evening . Last night at bedtime her O2 was around 94% . We think her numbers were down because of her being so wore out and tired . I gave her some mortrin to help her rest . She slept good all night , this morning she seems ok although she acts a bit tired . We will be watching her close to make sure she is not getting sick . I feel that she is just needing to catch up on her rest from all the hoilday exitement . Hope everyone is having a good week , prayers going out to all the sick ones .
TodayWell , our hoilday went wonderful even through it was a rough time for Erwin . Destiny , loved every minute of her hoilday . We loved watching her little face lite up with every gift she opened . We so , much enjoyed this years Christmas ! What a blessing it was to have our little girl for yet another hoilday season . We also got some exicting news to start off our week - today Erwin got a BIG 4 POINT & a BIG 8 POINT !!! Way to go sweety - Mommy finally gets her rack on the wall !!! (LOL) We hope everyone took the time this hoilday to cherish all the little things - for each day we have is a blessing !!! **MERRY CHRISTMAS TO EVERYONE** !!
TodayWe have some sad news tonight - Erwin's step-dad pasted away this evening . Thankfully , Erwin's good friend called him to let him know . *Please , pray for Erwin this will be a rough time for him . **And also pray for Erwin and Uncle Leo to have a safe travel to Alamba where Erwin is going to pick-up his Aunt Cene . He should be home by 4 Thursday .
TodayWell , yesterday was one of those rough days , here at our house . First of , all yesterday evening Destiny was having more tummy problems . Her muscles seem to be very weak now so her regular amount of her tummy medicine does nothing for her now . We called the Dr. and he changed the amount of medicine to everyday now instead of every other day . We started the everyday dosage today (keeping our fingers crossed that , that helps) . Then secondly , last night Destiny awoke with a really bad spell of night sweating , crying , and a very bad case of her tremors . Once , I got her back to sleep she slept peacefully the rest of the night . (Although , Mommy did not cause' of worring about her baby-girl . Today - seems to be a better day so , far . Destiny , is rested and very happy this morning . **We are thinking and praying for our little friend Katiyln who is back home now . She has a long recover , but we have faith that she will be back feeling great soon .
TodayDestiny , is doing great ! Her has been a little more tired than usual , but her Bi-pap mask broke so she has not been resting as well . (We have called in for a replacement mask & hopefully we will get it in real soon). She is getting in the Christmas mood and very , very anxious for Christmas Day . We heard from our Pulmongist today - Destiny will be going January 26th -27th for her PFT testing and a Sleep Study . We wish everyone a bright hoilday season full of HOPE for the New Year !
TodayWe just received Destiny's MDA goodwill ambassador letter in the mail today - she was again chosen the represent Ark-La-Miss as 2006' ambassador . We have enjoyed the past year , of traveling around to various events adn telling our story and making people more aware of MDA and SMA . Since , age of 2 Destiny has been apart of MDA and all the events and wonderful people she has met through-out the years has help her to more understand her DX and she has made many , many great friends and also touched many , many hearts . This is an honor for our family - and one we will be dedicated to this year as much as we have been in the past years . *** WAY TO GO DESTINY HOPE ***
Today** Many prayers going out today , for our little friend Katiyln , her Mommy , Daddy , and brother Ethan . Katiyln will be having a very serious and risky sugery today . We are thinking of the McNeely family today with lot's of prayers for you our little Princess !!! ** Deepest Condolences - to the Saville family . Their precious little girl , Morgan lost her battle with SMA this week .
TodayDestiny , awoke last night about 11 p.m. crying and having some really bad tremors . It was a rough night , with little sleep for all of us . We are thinking with all the weakness she had last week & this spell last night she is going through the stage of losing stregth and regression . It has been about 3 years since she has had a real bad case of regression , so I plan to let her take in easy for the next couple days . This morning she awoke happy and just a bit tired (from little rest last night) . We got the Pulse OX while delivered while we were gone , so I will take her Pulse and O2 and depending the numbers I may let her lay around today and wear her Bi-Pap most of the day . It is very hard to see her so weaked , but I am just so thankful she has no signs for sickness . It has been 1 year and 3 months with no hostipal stays and we hope to keep it that way !!!
TodayWe made it back home from our 11 day stay in Monroe. We had , a very nice time with our family and lot's of fun and some Christmas shopping too . I only have Erwin's left to buy , everything else is DONE ! It is going to be so nice this year with not being stressed out !! We are looking forward to all the fun to come this month . Destiny & I missed Erwin very much , and we all 3 were so happy to see one another again today (we are thankful to have each other). Destiny , was very abnormally fussy the first 4 days of our stay in Monroe . On the fifth day she lost , all ability to feed herself . She could not get her arms to move to her mouth . So , I had to feed her and give her her drinks also . I cried , most of the first of the week worrying about her . By the end of the week she had gained her use of her arms , but limited to things , and depends on her tiredness to what she can lift . She seems to be ok also now -with her fussiness . We will be going the first of January for some more apt.s & some tests . We are all , ok taking it all day to day . We have so , much to be thankful for !!! She is so ANIXOUS for Christmas !!! **MANY SPECIAL PRAYERS- for Mam-maw Moore , who had a really bad fall this morning and was brought to the ER . And also for Jaylee & Jaden (who both will be leaving for Dr. apt.s and testing Monday & Tuesday) .
TodayWe have been getting ready for Christmas !! Lot's going on for us this month to come . I have finished all my Christmas , all but a few last minute things . We are leaving in the morning to go to visit , shop , and get some R&R in Monroe . Erwin , will be also leaving in the morning for a hunting trip with his buddies . We all we come back refreshed hopefully and ready for the countdown for Santa . We got some wonderful news ... all the additions to Destiny's chair has been fully approved $1000.00 worth of stuff . So , hopefully before Christmas all the stuff will be in for it . And then the wonderful news , is the Dr.'s want Destiny to be on a Pulse OX monitor and Destiny is getting one shipped to her by our SMA group . "We love you Laura" !! We hope and pray this will be a wonderful , Christmas for everyone !!! And that we all take a moment to remember the true meaning of the season .
Today"Happy Thanksgiving" !! We had a nice hoilday this year . We are so blessed that we had our little girl to share it with again this year ! We are also so thankful for all our family & friends that have been there for us this year . I am thankful for Erwin and Destiny ! Even though it is only the three of us , we have so much love and happiness !! Destiny , is helping to put up the Christmas tree tonight . She could not wait any longer to have it up . She is so precious ~
TodayDestiny , is going really well . She is battling over all the winter colds wonderfully !! We are praying for another good and healthy winter for her . We are limiting our getting out activities , hoping to keep her away for the winter germs and out of the cold . She is exicted about Thanksgiving & Christmas hoildays . As we are too , what a BLESSING to have another hoilday season with her !!!
TodayDestiny , remains to run a low grade fever but , her cough has gotten much better as of today . On Tuesday the Dr. called in a antibotic (we are taking no chances on her getting anything). Yesterday , we went to the Lung Dr. apt . Her O2 was great it was 98% . And her lungs sounded good too . We go to Baton Rouge hositpal for 2-3 days in January , for a sleep study and a PFT . The Lung Dr. also wants Destiny to have another Echo done on her heart (he has concerns with the way her chest is sunken in now) and also wants us to get an apt . to see the Scolosis Dr. again to check on her back (to have some Xrays to make her in is not conpessing on her heart or lungs) . He also changed up her Breathing treatments some . It is really cold here (finally) so , we are staying indoors and warm . We are not going to chance getting sick !!! *** A little exicting news , Destiny was in our local family magazine 2 of her photos were chosen to be in the December issue (she always seems to touch everyone's heart and let's her little light shine) !!!
TodayWell , I spoke to soon about Destiny being so well lately ! Her cough has gotten worse as of this morning , she was coughing so badly we had to get her up and take the Bi-pap off this morning and give her a Breathing Treatment . She has hacked coughing all day - so we are staying in today and missing Girl Scouts and support group tonight . If she is not better by in the morning we will go to the Dr.
TodayDestiny , has been doing really good ! She has been healthy and very happy !! For about 3 days she has had a bad cough only at the first of the morning and late a night around bed-time - dunno what the deal is , sure hope she stays well and does not get sick . We are doing treatments and medicines in hopes for kicking anything before it starts up . She goes this Wednesday to her regular lung Dr. apt . We will be sure to update on how that goes .
Today**MANY SPECIAL PRAYERS FOR OUR LITTLE FRIEND WYATT*** He has been in the hostipal since Friday , he has phemoina and really sick !
TodayDestiny , got her Flu shot yesterday . She was running a low temp. when we got to the Dr.'s office , but her Dr. went ahead with her Flu shot being it was so , important that she go ahead and get it . She did not cry (for the first time) when the nurse came in with the needle . She only cried when it was given to her . She is getting , so big ! Her arm is a little sore today but , she is zooming around happy today ! Her Dr. also changed her reflux med. to a stonger dose , instead of one pill a day she is now up to 3 pills a day . He said we will montior her on this dosage and then go from there about the sugery . He said she may require it before she gets sick again . She will not have to have a Phemoina shot this year being she had one last year and , you don't get them but every 3 years . We pray that Destiny stays well all winter !!
TodayWell , today was Destiny's scheduled Flu shot apt . But , she could not get it today . She has been running temp . since yesterday . A dry cough , sore thoart , & a stuffy nose also . She was put on antibotic and a nasal spray (that we are to add to the list of med.s she , will now use the nasal spray everyday from now on). If her cough or fever gets worse we are to go back in to get rechecked . If she imporves she will get her Flu shot this going Thursday . The Dr. is also making a call to the GI Dr. to discuss a new relux medicnie for Destiny , although we may be having the G-tube and Nissen sugery soon he said if Destiny gets sicker or sick again before the winter months . Keeping our feinger crossed that she improves before Halloween weekend , but if not we will sure have something fun at home for her to do . Please , keep her in your prayers . *Also , prayers for my little sister Amber (Destiny's Aunt) she went to the Dr. yesterday and the reports did not look like scolois but , she has 2 budging disc's . More test will be ran and probaly PT to fix it all .
TodaySpecial prayer request for my little sister Amber . She will be having a big important Doctor apt . on Wednesday .
TodayOur family had a very emotional night ... My brother flew home National Guard training (his last schooling) last night at 10 PM . We all were so , very happy to see him . He came home 4 sizes smaller , buff , and very grown up . We are very proud of him !!!
TodayThere is a little Dorothy in our house tonight !! We went and purchased the costume and new basket with the Toto pup tonight . Erwin , said she little girl was going to be Dorothy and we were going to go all out with the complete suit . (Spoil Little Diva) !! LOL ! So , the basket Mommy bought we we used for something else , useful later , LOL ! But , Daddy approved for the glitter red shoes Mommy got so , that is a good thing ! I have to say , Miss Destiny (Dororthy) looks so , darn CUTE !! And we can not wait to get to dress her up , for all the Halloween fun at the end of the month . And yes , you all have to be patient and wait on the photo's ... only a couple weeks left . (LOL) !
TodayThankfully , Destiny is starting to feel better . She no longer has a runny nose , just has a slight cough now . We got her Bi-Pap back from being repaired today (the blower had went out).
TodayFor some many times , us as adults with all our stress , worry , and busy daily lives something let all the amazing little things pass right , by us without even noticing them . I can honestly say today , was not one of those days . For today , I let all the laundry go , all the dishes set , and the floors stayed unsweeped . For today , I was a child again ... I simply enjoyed my precious little girl . We played out in the playhouse , dressed baby-dolls , read storybooks , cuddled up in bed , had cookies and tea party , and then let Destiny have bubbles and lot's of splashing in the tub . It is amazing how the simple little things bring so much laughter and happiness to her . She wears her BIG SMILE 24-7 but today it was just a little bit bigger . The best part of the day was the "I LOVE YOU MOMMY" that I kept getting today . I cherish every second of my time with Destiny and I feel so very blessed that , I have been able to be a full time stay-at-home Mommy for her . I thank God everyday for the 2 gifts he has given me , MY LITTLE GIRL and ONE MORE DAY with her !!! For every morning she wakes-up is another gift !!!
TodayDestiny woke-up this morning with a bad runny nose and not feeling 100% good . We started breathing treatments and her Dr. called in a allergy medicine , so hopefully things will get cleared up . She started running a low grade fever aroud 3 today so , keeping fingers crossed that it is just the crazy La. weather that has gotten her allergies crazy and nothing more serious to come we pray .
TodayWell we got to talk with the Sugeron and Pulmongist . Destiny , will be having the Nissen & G-tube sugery after her next PICU visit with Phemoina . The Sugeron chose not to operate till then , due to her being so well for the past year with no PICU stays . He did state that the sugery will have to be done , only time will tell how soon . If she gets sick we are to ASAP call him to get her set up to have the sugeries. Also , what held them back was the fact that her weight is get , most SMA kids are very underweight . Her tests did show a SEVERE case of reflux in a 21 hour study she had 72 spells of reflux , one lasting 12 minutes and all the others averaged at 5-6 minutes long . So , we are keeping our fingers crossed we can keep her well for as long as we can the winter will be the toughest . The Pulmongist , agreed with the Sugeron choice he said that when the sugery came Destiny would have to be vented for sure . He did a gag test , and Destiny no longer has any gag reflex , which is not good at all . He ordered us to no longer use straws if possible use easy flow sippys , being Destiny has now lost her sucking ability . We will be seeing our regular pulmongist on the 19th , to set up some testing also , to have done soon . We feel today was both good/bad news . Good in the fact we hopefully can get through the hoildays with no sugery and bad knowing that it is just awaiting game now . At least we may have been given a little time to prepare ourselves and Destiny for the sugeries . Thank you all for the support , we "will" get through this .
TodayWell , we will be heading to the Sugeron and Pumlongist apt.s in the morning . Our first apt. is with the Sugeron at 10 and then we will have a break to run and have lunch then our next apt . with be at 2 with the Pulmongist . We will be traveling to Women's and Childern's Hostipal in Lafayette . Thankful , Erwin will be going along with Destiny and I . As always he is a Super Dad and there to help Destiny through everything and always be my side ! We are very nervous , but prepared with a list of questions for the Dr.'s We will try to update Thursday night with the information we receive . We are keeping our fingers crossed that we can schedule the sugeries for the first of January . Please say a prayer for us ...
TodayDestiny , had a good weekend . Although , on Saturday night she woke-up about 11 p.m. vomoting again ! With all the medicines she is on , is still seems to have problems so , everything is pointing to the sugeries . Sure hope Thursday we will know a little more .
TodayWe thank God everyday for all the family in friends in Destiny's life . Each of you make her time with us very special and memorable . And we apprecaite all the love and support you give to her and us . And saying this , some of our dearest friends we have made over our battle with SMA has been none other than other SMA families going through the same thing as we are . Their love and support is like no other (they know first hand what we are going through and what we are facing) . Yesterday , Destiny received a package in the mail , full of girly goodies from some dear friends in our SMA support Annette and Madison Reed . The box of prizes brought a HUGE smile to my baby-girls face . She is really scared about her sugery and don't want to go to the Dr. this Thursday . And the little things like that box of prizes is what we all take for granted , as for Destiny it was Christmas in her eyes . "Thank you Annette and Madison" . We send you both a big HUG and lot's of butterfly kisses !!!
TodayYesterday , Destiny got many modications to her wheelchair . Getting things changed for more comfortable seating due to her sugery to come and many modications due to her growing . They adjusted her headrest and her rib supports . Moved her joystick and her reclincing button for easier reach for her . And we finally got her tray fitted to work on her chair . Now , they are ordering new arm rests , new reclincing foot rest (hopefully) , and a new back mount , and a swing out joystick mounting . We cleaned house and worked on scarpbooking most of the day . Destiny , got to tag-along with Mommy to go to her Fire Dept. meeting last night .Being Daddy was working on the side job . She was so good the whole time . Today , we are busy washing laundry & catching up on school lessons . Destiny , will have her first spelling test on Thursday ! I am sure she will do just fine . We got the apt. today to go dicuss the sugery with the sugeron and also met the Pulmongist that will take care of Destiny while in the Hostipal during and after sugery . We go October 6th . Little than a week away and we will know the Sugery date which is making my nervous ! I know this is something we knew would one day come and knew that it was a discussion we would one day have to make . But , it still makes it no easier !! Please keep us in your thoughts and prayers and I will be sure to update you all with all the details after the apt .
TodayAnother friend of ours , Mom . Who also lives day in day out for caring for a little child with SMA sent me this peom . It touched me as I cried it all hit home . I just wanted to share it all with you , in hopes that you will all pray for all the SMA childern , that one day we can have our cure and our wheelchair bomb-fire !! Living in My Skin: Someone I love relies on me in ways you will never understand. Someone I love endures pain and challenges that break my heart and renew my spirit at the same time. Someone I love is unable to advocate for themselves for things that most of us take for granted. Someone I love will never have the opportunities that every child should have. Someone I love will need conditional love and support after I am gone-this frightens me to the core. Someone I love encounters pity, stereotyping responses and prejudice at every turn, because they look, act and/or learn differently from others. Someone I love has needs that require me to allow "outsiders" to have power and input in areas that should be mine alone to meet. Someone I love will continue to look to me for everything inlife long after other children are able to assume a place as part of theworld. Someone I love has needs that require more time and energy than I have to give. Someone I love has needs that mean I am not able to meet basic needs of my own. Someone I love has needs that have become the driving force behind major decisions my family makes. Someone I love has changed me in ways I will never be able to describe. Someone I love has taught me about love and about the really important things in life... One Day I pray we have our cure for SMA for someone I love with all my heart !! "Destiny Hope"
TodayWell Rita has come and gone . Thankfully our area was not hit to hard with the bad weather . We lost power Saturday off and on . But , it came back on late Saturday evening to stay . Other than lot's of yard work with lot's of limbs down . We only had the tin on our shed come off , and a few singles from the roof of the house come up . But , nothing that can not be repaired "thankfully" ! We pray for all the other's that were affected by Rita worse than our us . Destiny , is still coughing real bad , at times she coughs so much she gets real white and can't breath . So , we are still doing lot's of med.s and treatments , vests , and using the suction machine alot . Sure hope she feels better soon . She is still up and zooming around and smiling (as always) so that is a blessing .
TodayYesterday we got our house cleaned and washed all our clothes just in case of the bad weather from Rita . ***Right before bedtime , Destiny lost her 6th tooth ! Now , she will be singing all I want for Christmas is my 2 front teeth . LOL ! She looks and sounds so cute ! She was very happy when she got up this morning to find the tooth fairy had left her the new Barbie DVD . This morning we had to go into the Dr. very early due to the office closing early . Thankfully , Erwin met me there . It was a long apt. first of all being there were so many being seen , secondly because Destiny had to have 2 treatments while there . She has an upper resp. infection , thick serctions , but no fever thankfully ! We got several more medicines . And we had the G-Tube and Nissen sugery discussed . Destiny , we will having both soon as we can get an apt. I am to call the sugeron next week at the latest . Both Erwin and I had our good long cry , then when I got home I talked to Destiny about it all . She seems ok about it , I am going to try and make the next few days or weeks before her sugeries the best I can . To keep her mind off of it all !Mommy & Daddy are hanging in there , we are grateful for the love and support of family and friends . We will be sure to update everyone as we get the apt. date and sugery date . As for today , we are keeping our news on and staying informed about Rita . We are prepared and just pray that everyone is safe with their loved ones !
TodayWell , Destiny is still sick although she has had no more fever , thank goodness about that ! She slept most of the day yesterday due to being wore out from all the coughing and too the medicine makes her dizzy & sleepy . I have been on the phone all morning , getting new tubes Fed-X to us for her vest . And getting apt.s lined up . We go in on Friday evening to the Dr. to check Destiny's lungs & O2 levels . Then we go in October to see the Pulmongist to set up the Lung testing we missed this spring .
TodayWell , guess we spoke to soon . Destiny , is back sick with a bad cough this time . Sunday , night she woke-up with fever and barely able to talk . So , Monday the Dr. called in some new medicine to try with her . Which she hates the taste , of it so we have a battle 4 times a day getting it down her . Along with around the clock breathing treatments and vest we all are real tired . We are to go in Friday if she is no better so , they can do some lung X-rays to make sure she is not setting up anything . Hopefully , the Little Princess we feel better though . We have her Hostipal Free Party planned for Saturday and it will break her heart if we can not have it . So , please keep the prayers going for Destiny to get completley well soon !! *Special Prayers for our friend Jaden today , he is having a sugery today .
TodayWell thankfully , Destiny's fever is gone . She does have a stuffy nose but , no cough or runny nose . So , we are still making sure to give her allergy med.s and breathing treatments daily to hopefully kick it before it gets any worse . She is make to feeling her old-self happy & spunky over the weekend . So , keeping fingers crossed that all will stay well for her . We had a nice relaxing weekend , and getting ready for a busy week ahead .
TodayDestiny , still has ran a fever today . She is real tired , but seems to be in a better mood today . We will go in to the Dr. Friday if she runs fever again tonight . If not , than hopefully it is these teeth giving her troubles . So , keep your fingers crossed for us that she is not getting sick !
TodayPlease prayer for Destiny , she had a real good day today . But , this evening she started running fever . She is already sound asleep for the night which is not like her . I hope she is fully better in the morning . I am keeping my fingers crossed the fever is from her cutting all those new teeth .
Today****DESTINY SLEPT IN HER OWN BED IN HER ROOM FOR THE VERY FIRST TIME LAST NIGHT**** !!!! For the last several months Destiny has been asking to sleep in her own bedroom . But , both Mommy & Daddy would not come to terms with the fact that our little girl is getting bigger and is wanting to do all these big girl things . We have all slept in the same bed together since she was born . But , last night we hooked up the montiors and let her give it a try . She did WONDERFUL !! Usually she wakes up at least 6 times to have us roll her over but last night she woke up once to be turned . And she woke up this morning very rested and not tired at all , like most mornings . Mommy & Daddy will have to get used to the fact of no , little one in between us at night . But , I really think it is good that she is in her own bed , and resting better . So , now she has placed an order to go to town this week and get a bedside lamp , a clock , & a new pillow case . (LOL) ! We will also be getting her some blinds for her room and a ceiling fan . We also got a rental Bi-Pap machine to use while the vender gets Destiny's fixed or replaced . (Thank Goodness for that) ! On a much more serious note we heard from the Sugeron today . He read the reports from Destiny's tests last month and feels she needs both the G-Tube & the Nissen . What a blow , to us . We had our fingers crossed that things would not come to that . So , we will be going to see Destiny's specialist within the next couple weeks and discussing with them everything . We want to know all the good facts and bad facts for both of these sugeries . This is a MAJOR DEAL and we are so , scared ! So , please keep us in your prayers . Other than that Destiny is doing great ! And is doing so good with her homeschool lessons . She is getting to be such a smarty !
TodayDestiny , had a rough night Saturday night . Her was having lot's of pain again with her tummy . After , giving her 2 of your pills she was better enough to go to sleep . Boy baby finally peacefully slept at mid-night . Hope to get to talk to the sugeron in the morning . Also , the Bi-Pap went out !! So , the dealer will have to come out first thing Monday and get it fixed . We can't go another night with out it , tonight will surley be scary for us without it . But , we do have some good news also to report on . Destiny , beautiful little face will be on a STAMP starting this month !!!! WOW , huh !! It is really pretty and we will sure be buying lot's of the stamps for all our letters . You have to order them online they can not be picked up at the local post office , so everyone be watching your mailboxes for a letter with our angels picture on it !!! LOL !
TodayWe are home ... And boy have we got lot's to update about! First of all the 2005 MDA telethon went great! We really enjoyed visiting all our MDA families. The whole 2 days were very emotional for us, again this year our family was chosen for the live interview, which was hard for us to find all the words to talk about our angel-baby. Destiny, appeared in TV Sunday night and spoke for the first year !! Wow, Huh! We were shocked and so proud! I think this year is the first time she really understands something's about her having SMA. Monday, along with the interview she made many shots of the telethon and also she made the local Monroe news on Monday night. YIPPEE! Hopefully, by always spreading the awareness of her DX we will one day have a cure, and maybe be able to help others along the way too. *Thanks to all our MDA heroes (you know who you all are) the gifts for our family and Destiny were wonderful! And big thanks to all those who tuned in to watch Destiny on TV and all those wonderful people who donated to Jerry's Kids! Tuesday-Friday we enjoyed family time with our loved ones in Monroe, went out to eat, and did a little shopping. Although, we hated to leave, we really enjoyed getting home back to Erwin we had really missed him this week. Destiny, tooth is so lose now, she don't want to pull it yet for some reason! LOL! Hopefully, it will fall out soon it is really looking gross hanging there. LOL! We heard from my little brother yesterday on the cell, boy was Destiny and I so happy to hear from him. He is well and will fly home for a few days in October before he leaves off again.* Many thoughts and prayers to him ! *Also, many prayers to our friend Ronnie (who is Erwin's real good friend and coworker) he got hurt at work. We pray that he is back on his feet soon! *Special thanks to our friend Charlene for Destiny's package (she loves the PJ's) ! *And another special thanks to our friend Charottle and Dennis for Destiny's package (she loved all the things, the most the princess wand ) ! **Exciting news to tell ... Destiny's story was aired on the Delilah show, and Delilah sent Destiny a package with a CD and a signed photo of herself for Destiny. It was awesome !! **We also received our copy of the SMA faces, Power Point CD! I cried thru it all, it is wonderful. Destiny, enjoyed seeing all her friends faces. She said Mommy, we all have SMA the same, I said yea baby you all do. She saw the ones with angels beside them and said, but Mommy there are so many SMA friends that are angels and I know they are watching over us . (what amazing hope & faith God has put into one little 6 year old little girl) I am so thankful that, that little girl is mine !!! Hope the next entry will not be so long (sorry) ! But, we just wanted to share all the exciting news with everyone & it is always up lifting to be able to have good news !!! Blessing to everyone and remember Sunday is grandparents day !! So, happy Grandparents day to all the beloved grandparents out there ...
TodayWe are headed to Monroe for the MDA telethon tonight and all day Monday . We are looking forward to a great Labor Day weekend . We will be staying a week with my grandmother after the telethon , so we will be sure to update when we get back in town . Hope everyone has a good Labor Day ! **Watch for Destiny on TV , she will be on Monroe local channel 8 ! And remember to donate for Jerry's Kids , we hope to have our cure one day for our little angel !!! **HAPPY LABOR DAY !!
TodayToday , Destiny master Phonics in lessons . She now is sounding out the sounds that the letters make . And starting to really read ! She read a few pages from a step one story book today . (Mommy's little baby-girl is getting to be a big-girl) We babysat Madsion today , Destiny was a big help as always . Although , when Mattie got tired and fussy Destiny said ok Mommy she is on my nerves ! (LOL) My auxiarly group all got signed up with the Red Cross , we will be doing these to help the people that have came to our area because of the Hurriance . And we also will be helping out for the flight of soilders coming into see their families in Sept. It feels good , to help others (even though my own little family is going through alot) . I think , I should give back as much as I can to others too. Destiny , is asking lot's of questions about the hurriance she watches the news and was getting real sad . So, tonight we took her to see the some of the families that have been affected , and for her to see they are ok , just really going through alot ! It helped her to see it all , she is ok with things now and not so sad . We are planning to get somethings gathered up to take to some of the childern , on Friday . Prayers are with everyone that has been affected by this devasting time . My heart truly goes out to all ... **Thinking of you Dixie , I can not imagine what you are going through (be watching for a package in the mail at your parnets house) we will be sending you a care package too !! We love you and we are praying for you !!!
TodayIt sure has been a very busy day here for us . We started homeschool for the first day this year (today) . Destiny , did really well ! We started at 10 and when we were finished it was 1 . We worked right through lunch without even knowing it ! (LOL) Destiny , is really into school this year and likes to learn things . So , hopefully she will do real well . This evening , at 5 I went to a homeschool group meeting CCHSA . And the at 6:30 had my fire auxilary meeting . Between school , hunting , auxilary , girl scouts , & fun will we sure to have busy schedule for the fall & winter . Destiny , is doing well we are thankful for that . We still are awaiting the date to see the sugeron . Hope to hear from them this week sometime .
TodayWe are so thankful we did not get any side effects from the hurriance our way . Other than some bad wind , and our power be out for about 2 hours . We send out prayers to all the families affected by todays , storms . *A special thanks to our friend Ms. Charlotte Leach (Destiny got her card today) , she was very happy !
TodayMany prayers to all of our friends/family that may , affected by the hurriance . Special prayers for my cousion we lives in New Orleans , but now is in Lafayette safe .
TodayDestiny , got to attend the MDA McCartney Oil Fishing Torunment ! Her Daddy and his friend also fished in the event . We all had a really nice day , and the event raised lot's of money (hopefully one day we all will have our cure) !!
Today***Destiny , lost her fifth tooth today*** !!! Destiny , lost her first top tooth , today . Which made her 5th one total to lose . While brushing her teeth it started to bleed really bad , so I checked it and it had to be pulled . It came right out ! It bleed really bad for several minutes , Destiny got shaky and turned white ! She had a panic attack !! Which scared Mommy to death . She soon settled down after I got a cold rag and stop the bleedind , then I gave her two puffs for her inhaler . Which helped her settle her breathing pattern down . Now , she is smiling and happy that the tooth fairy is get again paying our house a visit . (We had told her along time ago that her front teeth are real special and she will look so cute and talk different without them & that the the tooth fairy brings big gifts for those teeth) So , boy is she anxious to see what the tooth fairy brings her !! So , 5 teeth now gone & one top tooth loose still .
Today**Many special prayers today for our Haley**! She is traveling to Tulane hostipal in New Orleans for some testing . Please keep them in your thoughts .
TodayWe heard from the GI specialist again , today . They have got all the reports to , the sugeron for him to review it and then they are going to call us with the apt. to go back to talk with the sugeron . They still would not give us , any details about all the tests . Which makes , nervous ! No , news is good news , but it only leaves the mind to wonder and worry . Just keeping our fingers crossed and praying things will be ok . I am thankful that the GI Dr. keeps us update with what is going on , though I hope we soon know if sugery will happen or not . I think the unknown is what is so hard . Just going to take one day at a time ...
TodayDestiny's , medical alert bracelt came in . It is so , pretty ! We had it made with sterling silver and crystal pink and purle beading . With a Princess Tiara charm . Then it has the standard medical alert sign and badge . That has her Full name , DX , that is uses a chair ,and everything that she is allergic to . It is really nice and worth the money we paid for it ! We pray that it has to never be used , but Destiny will wear it 24-7 and not take it off to make sure things are known in case of an emerency . We will be lighting our candles tonight (for the annual SMA awareness , candle lighting ceremony), and saying our special prayer for Destiny and all our SMA friends that one day we will have our cure , and a special blessing to all the SMA families and their angels that lost their battle and are in heaven now .
TodayWe got the call with the results , from all the testing Destiny had on the 15th . The GI specialist is sending us back to discuss everything with the Sugeron . They are suppose the set up that apt. date and call us soon as it is set . I am no the , edge about it all . Worried sick , not knowing what to expect ! Please ,keep us in your thoughts and prayers !! And I will be sure to update as I know everything . **Happy Birthday to my Mom and Destiny's Maw-Maw . We love you lot's and hope you have a good one !!
TodayWell the tooth fairy has come and gone again ! Leaving , Destiny with lot's of goodies as always . We have been really busy today , getting ready for our big Yard Sale we will have at our house Friday & Saturday . And Destiny is having her own little cookie sale on Saturday , so everyone come buy some yummy cookies !! I have been really busy myself trying to get the our end of August plans and September plans squared away . We will start Home Study in Sept. and also be taking a vacation with Destiny and Wyatt . Which Destiny is very anxious about ! Tonight , I had our community's monthly Fire-Women Auxillary meeting . And I was voted the Secretary . It was fun to get out with the ladies and laugh . We are planning a lot's of fun things for the community and childern to do . Destiny , got to stay home with her Daddy and she enjoyed that (Daddys-little Girl) . She was as always the talk of the evening with the ladies , she was picked to be the Poster child for our Fire Dept . YIPEE !!! Hope everyone has had a nice week . We will be sure to update about our sale . Hope to see some of you there !!!
Today***Another tooth gone*** ! Destiny , woke up this morning and I checked her teeth being she had 3 loose one on bottom and 2 front teeth . And there was no bottom tooth ! I don't know if she lost it when they tubed her on Monday or she lost it in her sleep and swollowed it ? But , she has now lost her 4th tooth !! She was upset , and cried that the tooth fairy would not come we would write her a letter and place it under her pillow tonight ! We are patiently awaiting the lose of her 2 fromt teeth now !
TodayWe are home ! Destiny's testing went great ! We arrived at the hostipal at 8:30 Monday morning . Destiny , was then admitted and took to her room . Where a team for Dr.s & Nurses came in to speak with us about her testing , illness , her being put to sleep . Destiny , sat in the bed very quiet , but cheerful . Although, I could tell she was real nervous ! As were we all . When the sent her back to be put to sleep , it broke my heart . She cried for Mommy ! And I lost it , I could hear my baby calling for me and I could not be there to hold her hand . She was asleep from 11-12:30 then in recovery where she had to have x-rays done . During the scoping they also did a stomach biospy , and place the Ph Phobe tubing in her nose along with an IV for fluids . When she came out of recovery and saw us for the first time she was still very out of it , but from under the covers she reached out her little hand for mine and said we made it Mommy to me . The specialist and the GI Dr. came to talk to us and said she did great , she had a little bleeding on her mouth from the tubes that where down her thoart and when she got back to her room she started vomoting blood . But , soon went back to sleep for the most of Monday . When she woke she felt ok , till the nurse had to come and place the nose tubing further down . Which was very uncomfortable for her . That night she got to have her IV out and start eating . This morning soon , as she woke we got to take the tubing out and go home ! "Thankfully" ! We truly believe that Destiny had her Angels with her during it all . We are so , blessed that things went so great ! We will get the Ph Phobe study results along with the Muscle Bio . results in about a week . We are praying that things look ok , we are just taking things one day at a time now . Thank you all for praying for us ! Thank you Kim , Kelsie , Chantel and Stefanie( for being that phone call away for us) ! Thank you Denise , Heidi, and Shonya for always being there for us . Thank you to my family in Monore , I am so thankfully for my Dad , Step-Mom & Grandmother . Thank you "MOM" for being there on Monday for Erwin , Destiny and I . (lot's of love to ya) Thank you to my Step-Dad , for loving us and Destiny . And to all our SMA friends that gave me advice and support . And thanks to GOD above ! *And most of all for Destiny , our angel - baby ! You were so big and brave . We hope you will not have to go through this again !! We now hope we can just enjoy the next week and we will deal with whatever the results come back as , then . With the support & love of all of you our jorney with our angel-baby will be much easier as long as we have you all in it . Let's all be thankful for each day we have been blessed with !!!
TodayThis will be the last update before we leave early in the morning ! We want to ask everyone to please keep Destiny and Erwin & I in yur thoughts and prayers that everything goes smoothly ! I also want to thank all of you that have called , emailed , and came to spend sometime with Desitny , this week . Your love and support mean alot to us . All of you that have our cell #'s feel free to call us . As we will surely be to nuts to call anyone ! **Keep the prayers going***!!!
TodayWell , the site is finally back up and running YIPEE to that ! I will try my best to fill everyone in as best I can . So , I will try and back track ... First of all Happy late Birthday to my little brother who is away at training for the Army . July 29th was his Bday . On Aug. 3 , Destiny went to see the second GI specialist . And he wants Destiny to for sure have the Ph Phobe Study along with the scope . So , we go this coming Monday to Laf. Womens and Childerns at 9 , and at 11 am Destiny will be put to sleep for it . She will then have to stay at least 24 hours for the study . We are very , very nervous about Destiny being put to sleep but this test will tell us for sure if she has to have the nissen and G-tube done . Please , pray for us !! Other than that , things are great ! Destiny , is getting ready for home study in September . Big 1st grader (Mommy's baby is growing up)! Her playhouse is done and she plays in it , non-stop ! Destiny , is getting ready to start beauty pageants again . So , she is really anixous about that . We have lots of things planned for the rest of August and the month of September is full already . So , we are keeping busy and trying to keep our mind off things . Oh , and Destiny lost her 3rd tooth this week ! I want to thank all our friends and family that have called and came to see her before Monday . It means so , much to us ! I will be sure to update again now regularly so make sure to come again and see what is new with the Princess . And make sure to sign her guest book ...
TodayGuess , recieved another Summer Reading Program award today . She has now made it to reading 78 books . She has till August 6th to make her goal of 100 . I am sure , we will read the few left to read this week knowing her . LOL ! She was so happy to get her award , and I am so very proud of her !! We went and got a air unit (with remote) for her playhouse this evening . She is for sure a Princess in a Castle now , it is looking so pretty !
TodayWell , Destiny is doing ok today . She started out the morning very tired and still not feeling to good . So , I gave her another dose of her med.s , and my noon she was feeling better and alot more cheerful . So , that was a blessing ! *Please prayer for a speedy recovery for our friend little Grace who also has SMA and had her Nissen and G-tube sugery today . Kelly , we are here if you need to vent , cry , scream , or chat . Prayers and lots of love to you guys .
TodayWhew , boy is our bunch tired ! We had a work filled weekend . Saturday , evening Destiny got to spend the night with her Ma-Maw . She was so happy to see her Ma-maw & Pa-paw . Late the evening Erwin ang I got the outside of the playhouse painted , then went out to eat and went and rented some scary movies that we don't get to watch with Des. home . Today , I got up early and went and picked up Des. and my sister Kim and Haley we went shopping and then came home to paint the inside of the playhouse . It looks so , good so far ! We cooked out today for Kim's Bday ! "Happy Bday" !! Then tonight we tired to get to bed early , we all were so tired . But , soon as Destiny's head hit the pillow she started her vomoting . Poor baby , turn white as a ghost . She is sleeping peacefully now , Mommy is now up watching over her baby-girl and worried . August 3rd can not come soon enough , we need to know what we have to do to help our angel . We have a busy week planned so make sure to chekc back with us later for more updates !
TodayWe made it home yesterday evening from our week long trip to Monroe to visit with family . We had a nice week and it was so great to get away for a few days . While there we got to go see my Aunt Tami and my Great Great Aunt Nellie . And we went shopping also . Destiny , enjoyed her time with family so much that she cried when we had to leave . Now , that she is back home with Daddy she is happy to be back . We have a real busy weekend , trying to finish up the Princess's playhouse . We hope everyone had a great week and will have a wonderful weekend ahead . *Please keep our little Haley (Destiny's cousion in your prayers , she will be having testing done on August 25th !
TodayWell , hopefully our luck will soon get better . After , all long stressful week with Destiny's GI apt.'s . Erwin , had to go into the Eye specialist on Friday morning . On Monday at work a piece of wood went in his eye . By Friday , he could not see out of it , it was blood red , and he was in alot of pain . The Eye Dr. said he has a severe eye infection . When people have eye infections they usually have a ucler in their eye , at the most 2 uclers . He had 9 ! They numbed is eye , he is on eye drop med.s every hour and med.'s by mouth everyday for 5 days . So , he had to be home all day Friday , and Destiny & I did the best to take care of him . Saturday , we sat around the house just relaxing and watching TV . Erwin's , eye is now alot better already (thankfully) . Destiny , is well and full of energy , she has kept me on my toes this weekend ! We are headed out this evening to go to Monroe for a week to spend time with family . (A much needed get away) We will be sure to update soon as we get back in town . Hope everyone has a good week .
TodayWell , it has been a very /very hetic and stressful past 2 days . On Wednesday , Destiny and I had tons of errands to get done and lots of medcial stuff to pick up for today's apt . with the sugeron . We was able to go to the libary to get her newest award , for reading more books (she is working very hard towards her goal) , she is so proud of herself ! Then Wednesday evening we went and saw baby Joseph for the first time , he is just precious . Destiny , loved on him and gave him she bottle . Then she got to stay the night with Ma-Maw . Erwin & I went to the ER with Stef and Theron (we are saying a prayer that your arm heals fast) . This I got up early and headed back to the hostipal to visit with little Katylin and her Mommy (Katylin we are so happy you are home now , and Princess you are getting so big and you are a cutie pie) . Then a ran and picked up Des. and got home and got Erwin and we headed off on our trip to the apt . today . The sugeron was very nice and very kind in explaining everything to us , including taking time to answers all our questions . We feel somewhat better , but still nervous . We will be going back to see another Pedi GI specialist that works hand in hand with the sugeron , and the new Pedi GI will be putting her in the hostipal out of town for a couple of days . The will have to put Destiyn to sleep and perform a PH Phobe Study on her , then after those tests are done , we will go back to the sugeron and he will then say if we are going to perform the nissen & the G-tube . Going by her Upper GI and swallow study (things have progressed and muscles are no longer working the best) so , this test will give him the 100% answers about the sugery . "Please keep the prayers going" !!! We will be going to met with the new Pedi GI on Aug . 3rd and then the PH Phobe Study will be scheduled for us . So , not sure yet to when that will be , lots to pray about and keep me a worring till then . We are scared to death , about putting her under for the study but we will make it through all this because of our great support system we have ! **Thank everyone for all the on going prayers for our family , it means so much ! You truly learn who loves and cares about you when a time like this hits . We are so thankful Destiny is so loved !!! ***Thank you MJ & Brenda (BSMA Inc.) Destiny recieved her blanket , doll and 2 TY animals in the mail on Wednesday . She was so happy and so proud ! And what was so , neat is her blanket of it honor of you "Lindsey" ! Destiny , thought that was special . And guess what MJ , Destiny named the doll "MJ" !
TodayWe got the call from the GI Dr. today ... We will be headed out of town on Thursday to see the Pedi GI Sugeron . News , we did not want to hear today . Both Erwin and I are in a bit of shock . All I could do this evening was cry and hold Destiny and PRAY ! We need the love , prayers , & support from all our family & friends more now than ever ! Destiny , was sick all night last night , we did not get any sleep . So , we took the day to lay around and rest . I have lots of errands to go and get done to prepare for Thursday . I want to let everyone know how much all the prayers , caring concerns , call , emails and cards have meant to us . Most of all just please keep the prayers coming for our little girl . *Thank you Joshua for Destiny card , she got it today . She misses you already from ball and we will be seeing you real soon . *Please , say a prayer for our little friend Katyiln she is sick too .
TodayWell the little patient's knee is improving lots . I finely out Destiny in her chair today , she has not complained much at all with her knee today . It now , only seems to hurt when she gets transfered in & out of her chair . The Princess now , has lights in her house ! Erwin , worked all evening getting the line ran , buried and lights on in the playhouse . She went in the playhouse my her ramp for the first time today , she giggled all the way up & down . She is so happy ! Not alot more to go till , we can paint and post photo's for everyone . And of course have our first tea-party ! (LOL) We want to say a BIG thank you to Ms. Denise for the package that you sent to Destiny . She got it today in the mail . She was so surprized and smiley !! You are to sweet , and we love ya ! Still no news from the GI Dr. , we are waiting on pins & needles for the call . Keep us in your prayers and we will update soon as we get some news ...
Today***HAPPY BIRTHDAY TO MAM-MAW MOORE*** We love you lots and we will be seeing you real soon ! Destiny , had an okay weekend . We didn't get her out much just stayed home to let her knee get well . She still has some pain , mostly at night time . I did get her in the pool today , I think it helped her to get in , she was able to move it around some with out it hurting so much . Erwin , did more work to the playhouse (it is looking so great) he really has put in alot of time and love to the project , it has to be perfect for his baby-girl . He got the door built today , the water ran , and the ramp built . Not much left to go now ! We have Haley staying the night , so I will be on my toes !!(LOL) They girls are having fun playing though. I have a full week of plans ahead for Destiny and I . So , check back with us later to see what we are up to . Hope everyone has had a wonderul weekend and has an even better week ahead ! Blessing and thanks for all those who are praying for our little girl . We will be sure to let you all know soon , as we get the report for the GI Dr.
TodayWell , yesterday was full of emotional ups & downs . So , just now getting a chance to sit down and update . Yesterday , we had to get up early and go off and get the Swallow Study and UGI performed . It usually only takes a few mintues for these tests , Destiny's took 2 hours ! Her Swallow Study showed that her delayed swallowing , is no longer delayed (it is not working at all now) . No , closing it just stays open . The UGI did not go well at all , have taking the first glass then 4 sips of the next Destiny , started vomoting . They said that she is refluxing everything that goes down , right back up . The UGI test tech said that looks in her opinion Destiny will be needing the nissen & g-tube sugery . (We have our prayers going ) We are scared to death !! And just awaiting the call from the GI specialist , soon as he gets the reports he should be calling us . We tired to sit Destiny down and talk with her she has been asking lots of questions about her tummy . She over hears everything , so we are being open and honest about the chance of sugery . She is handling knowing about things better than she does not knowing . Ma-Maw & Pa-Paw went with us to have the testing (being Daddy needed to work , he was off both Monday & Tuesday) . I am glad they were there , with us . It helped Destiny and I both . After , we left we took Destiny to eat a big breakfast , it was almost lunch time but she wanted pancakes ! (LOL) When we finally made it back home , Destiny and I laid down for a afternoon nap . Last night , she had her Ball Awards night , it went so wonferful !! They had it a a very nice place in Alex . the Alex firemen & Am . Vets were all there to sponser it . They also had the Balloon man there . They cooked hambugers for us all . And they had a huge baseball cake made for the kids . Destiny , enjoyed being with all her specail friends , dancing to the juke-box and getting lots of balloons made . Channel 5 was also there , Destiny got more TV time , when they called her name is zoomed up there with a HUGE smile on her face for the camera man . She got a trophy and a medal . She was so , proud ! Both , Erwin & I teared up . We are so , proud of her . It was nice to have a bit of happiness in our worried and rough day . At the end of the ceremony , Destiny got her leg hurt by her chair (her lower knee got twisted) . She was hurting so bad , she was crying and her tremors started . We were about to leave , when she stop breathing and fell backwards in my arms . It scared everyone ! We think , between the pain of her knee and getting overly hot her O2 fell . After , getting her loaded ready for home with the air on max on her she soon got her color back and was feeling better . I gave her some breathing treatments soon , as we got home , some mortin for the pain , and got her on her Bi-Pap . She sleep so good ! And woke-up with just a little hurting aroung her knee . She is in a good mood and shows no signs of anything wrong . "Thankfully"!! We have to go in to town and met Erwin this evening , to get some business papers signed then we plan to come home and take it easy tonight watching some movies . It has been a hetic week for us all . We will be sure to give all the details , soon as the GI Dr. calls .
TodayWe made it home from the Dr. apt . with the Pedi GI specailist out of town . The apt . went well , Destiny loved the Dr. his staff kept going on about how pretty and cute Destiny was which lighted the time there for Destiny . They were all so , kind ! The Dr. seemed ver |
