2008 Updates

JJ's Journey





December 2008 - 4 years, 1 month!    Frosty
December 31, 2008 - Jenna is doing ok.  We need to have her urinalysis and urine amino acids done, but I am sure they will come out fine.  I did an at home Uristix last night and everything looked pretty good. 

The girls had a nice Christmas.  Jenna was able to go visiting so that was nice too.  The previous week she missed out on  as she was runnign a temp of 102 and had some junk in her lower lobes.  She tolerated the antibiotic well and her temp came down.  Well sort of.  She continues to have an on again off again low grade.  This actually has been going on since September.  We thought it may be teething and a molar did pop thru.  Her bottom gum is really swollen, so maybe it is teeth.  We'll see.

Jenna received a Special Tomato Multi-Positional Seat from the Independence Foundation's Christmas Wish List Program.  It is very nice for her.  We will most likely be lending out her old chair to a family who needs it.  Hopefully they will get as much use out of it as we did.

Prayers going out the all the sick kiddos.  Especially those who are in the hospital.

Wishing you a very happy and HEALTHY New Year!


December 17, 2008 - So I spent the afternoon visiting 3 little friends in the PICU today. One has pneumonia, one is getting ready for trach surgery tomorrow, and one has been intubated for over a month and is thinking about a trach. Poor babies. I wish I could do something to make them better or heal quicker. My heart just goes out to them along w/ my thoughts and prayers.

Jenna is still trying to cut that molar. She is running low grade fevers 100.6, lots of secretions, and just very cranky. Other than that she is fine. She was unable to go to swim today and we canceled Special Ed too. We will also cancel swim for tomorrow. I hoping her fever breaks in time to spend Christmas w/ Grandma on Saturday, but I guess we'll see.


December 14, 2008 - Today is a sad day. I have just learned another SMA child (locally) has earned his wings at the age of 6 months. I hate SMA. It robs these children, their parents, and their family of such a precious life. It is just so unfair. My heart, thoughts and prayers go out to the family.

Many thoughts and prayers Shira as well. She is in the PICU with RSV. Poor thing. RSV is so nasty. And such a terrible, terrible sickness for our already respiratory compromised children. Get well soon Shira!

There are so many other kiddos sick right now too: Logan H, Leah, Taylor, Logan P, you too MJ, and any others I may have missed. You all are in my thoughts and prayers.

All in all Jenna is doing ok. Her top molar finally broke thru. She had a few days of relief and now it seems like we are going thru it all over again. She is running a low grade fever, many secretions, trouble sleeping, upset tummy (yes, from teething too!). Poor thing. I can't wait until the two bottoms ones come thru and she will be all done for a couple years.

Well we are having great success with the Independence Foundation's Christmas Wish List for Special Needs Children. We have been able to grant almost all of the wishes except for the wheelchair accessible vans. We are still working on those. If anyone has a van they would like to donate, whether it is accessible or not, please let me know!

In case I don't get a chance to update before the holidays, I hope everyone has a very merry one being with family and friends. Happy Holidays!


December 5, 2008 - Sorry for the lack of updates lately.  As usual, it has been pretty busy around here.  And now with the Holidays here, even busier.  Jenna seems like she is doing a little better.  She has not had a fever all week (knock on wood!)!  This is a great sign.  I also did a Uristix just to see where she stands as she went off the VPA a month ago.  Can you believe that her glucose came out normal!?!  And that there was only a trace of protein?!  Her ph is still off, but this is major improvements!!  We are really happy that the kidney involvement is correcting itself being off the meds.  Surprisingly, she has not lost any strength either.  She is actually doing quite well.  While sitting on my lap, she is now swinging her legs back and forth and that is just wonderful to see.  In Aquatic Therapy the other day, she had 1 lb weights on her ankels and was still moving her legs in the water!  That is just AWESOME!!

I have been in the Holiday spirit lately, which is nice.  Last year Jenna spent a few weeks in the hospital this time of year, but it is great to be home this year.  Plus I am helping the Independence Foundation (www.TheIndependenceFoundation.org) with a Wish List for Special Needs Children.  We are trying to match up families "needs" with wish grantors.  So far we have quite a few families that will have their wish granted!  It is amazing to see how many people really need help.  And of those who are Special Needs Families, it is quite different than granting toys.  Some need a ramp to their house to help their child in/out, some need a manual wheelchair.  Others need simple things as bed pads, a reacher, or a gait belt.  I am so happy to be a part of this wonderful program.  There are so many who need.
We will be seeing Santa Clause a couple times over the next few weeks.  We have a Christmas Party tomorrow and one next weekend too.  The children love it as they have crafts, games, and of course SANTA!  I will be posting pictures when I can.
There are SO many kids sick right now, some in the hospital some not.  My thoughts and prayers are with them all!


November 2008 - 4 YEARS OLD!!  Turkey 


November 16, 2008 - Jenna has been fighting a cold for the past couple of weeks.  She gets and on/off fever (which isn't difference from before the cold, heart rate goes up and down and tons of junk being suctioned out.  It is really just in her head and throat  and thankfully not in her chest.  So we are managing.  I started giving her Dimetapp, this past week and it is actually helping.  The secretions aren't as thick and as much with taking it.  So that is good.

So far we have not seen any improvements or weaknesses since taking Jenna off the VPA.  After being off for 2 months, she will need repeat tests done to see if there are any improvements and then again at 4 months. 

On a good note, Jenna received her new powerchair this week.  WHOO HOO!  It is so very nice.  It has a vent tray on the back to carry her cough assist, battery, and inverter.   Again, so very nice.  We had some nice weather the other day so we took her outside for a short time to het her get in and go.  She did great!  Of course I took a video! : )  Jenna's New Wheels!
Prayers going out to all the sick kiddos out there as there has been so many this fall.



November 2, 2008- Happy Birthday to my sweet little princess!  I cannot believe you are 4 years old today.  I remember when the doctors told us to take you home and love you.  I thought I would never see this day.  You are a strong fighter and I am so very proud of you.  Love you Babydoll and Happy Birthday!




October 2008 - 3 years, 11 months!    Jack O' Lantern 

October 30, 2008 - As of today, we are closing another chapter in the book and starting a new one.  Yesterday Jenna was diagnosed with Fanconi's syndrome - the tubes to the kidneys are impaired and she is losing nutrients in her urine and they are not being absorbed into her body.  The nephrologist (kidney specialist) believes it is due to the VPA.  Even though I thought this is what was going on with Jenna, it still makes me sad as it gave her more strength.  We have the fear of the unknown - will she regress?  How much strength will she lose?  How quickly?  I guess time will tell.  After speaking w/ Dr. Swoboda, she said it doesn't necessarily mean it is from the VPA.  She said she has seen this in SMA patients who are not on VPA too.  I guess I am hoping it is from the VPA because it should reverse itself in 4-6 months if it is.  If it's not, what does that mean for Jenna?  Does that mean her kidney's will eventually fail with or without the VPA?  Again, the unknown. 


October 16, 2008 - "knock on wood" Jenna's leg has healed and her foot is no longer bothering her.  Hopefully she will be fracture free for a very long time now!  We saw the Endocrinologist this week and she agrees w/ Dr. Swoboda on IV Therapy.  Typically this is done in the hospital every 3-4 months.  I explained that we will not start this until Spring due to respiratory season.  It seems like every time Jenna is in the hospital, she ends up catching something.  So she said that they were going to see if they could set it up at HOME!  Wow!  Wouldn't that be great?!  They have never done that before so it may take a little while to set up, but that would be FANTASTIC!  We would definitely do that.

For the past couple of months, Jenna has been having some other issues going on too.  She has been running low grade fevers of 99.6 - 101.  All respiratory, blood, and urine cultures come back negative.  She was even on an antibiotic and it didn't take care of the fever so I would guess it wasn't a bacterial infection either.  Definitely not a virus because it has been almost 2 months now.  She has been having some issues with glucose in her urine, so maybe it is related?  We have ruled out Diabetes as her blood levels are good and we ruled out Thyroid problems.  As of yesterday, the amount of glucose has increased and we have contacted a nephrologist.  They are squeezing her in - in 2 weeks.  My first thought is VPA-induced Fanconi sydrome, but I guess we'll see.
Well Jenna's birthday is coming up real soon.  I can't believe she will be 4!  We are planning a Barbie Birthday party again this year and all the kids will be dressing up in their Halloween Costumes.  It should be a great time.
Prayers going out to all the sick kiddos!  I can't believe how many there are!  My thoughts and prayers are with you!



October 2, 2008 - One month from today is Jenna's BIG 4th birthday!  Whoo Hoo!
We went to see the Ortho again this week and they did another xray of her foot.  It did not show any fracture so that is good.  Although it is doing a little better, she still is funny when you touch her foot.
Jenna's new power chair came in this week too!  There are still adjustments to be done and will take another week to complete, but it is here!  What a nice chair!  She loves it too.  It is hot pink base with a black chair.  Due to her needs of being transported flat and needing to get into that position to suction, cough, etc, we needed to get full power (except for her legs).  We gave her the controls and showed her how to go up and down and lay back, etc.  Boy was she interested in that!  She had it down pat.  She could go from power to mode to change her position and back again.  Smart girl!  We can't wait until it is ready to roll!
As promised, here is the photo of Jenna on the pony!




September 2008 - 3 years, 10 months

September 27, 2008 - Jenna is still having issues with her foot.  I talked to Ortho yesterday and they want to see her because I have a hard time getting her AFO on without her freaking out.  I am sure they will xray her again.  I was also thinking that maybe we should look into Night Splints.  This was she could be kept into position while sleeping.  Her DAFOs are too much to wear overnight, she would get pressure sores, but the Night Splints look real soft and comfy. 
Jenna is also on an antibiotic.  She is starting to run low-grade fevers again.  She saw the pediatrician yesterday and they heard rales in her right lung.  To be cautious, she was placed on Zythromax.  Everything else was good, ears, throat, etc.  Besides being cranky, she is actually doing quite well.
I have to say that Jenna must be the most popular girl in her class!  All the kids really seem to love her.  Yesterday we were walking down the hall toward the class and a few kids started yelling, "Here comes Jenna!"  They are all so adorable!  It was Jenna's turn for Open House today and it was great!  They had a petting zoo, pony rides, and a clown.  JENNA RODE THE PONY!!  She absolutely LOVED it!  She was smiling and giggling the whole time.  I didn't have my camera, but Ms. Darlene took a couple pictures.  I will have to post them when I get them.
Still many kids out there who are sick.  I cannot believe that so much is going around already and it isn't even October yet!  My continued thoughts and prayers for all the kiddos and their families.


September 24, 2008 - Jenna's knee has healed.  We saw the Ortho last week and had another xray done.  It looked fine and showed new bone growth so that is good. Unfortunately, we are having an issue with her foot now.  She woke up last Friday real cranky and we didn't realize her foot was hurting her until we put her AFOs on and all she did was cry.  Even while they were on.  So we took her for an xray and it was negative.  I just get this funny feeling that it may still have a fracture.  She still won't let anyone go near it and complains and cries when you put her AFO on.  We may just have to take her back to the doctor and ask for another script. 
Jenna went back to PreK this week and LOVED it!  They made Friendship necklaces and painted Fall Trees and pictures for Open House, which is Saturday.  They played games and sang songs and had a Bible Lesson.  She really enjoys all the kids and they really seem to enjoy her too.  One little girl even said "I just love Jenna".  It was too cute!
Well we are slowly progressing to Jenna's addition.  Paul has been working this week on taking down our back deck.  What a job that is!  We are tentatively looking at breaking ground the second week in October.  They are also planning on it being a 6 week job so hopefully just before Thanksgiving it will be done.
Just to let everyone know, the flu has started already!!  So if you haven't looked into getting your flu shot, please do!  There are also SO many sick kiddos out there, it is scary!  Hugs and prayers to all of you!


September 11, 2008 - Just a quick update....  Jenna was discharged late yesterday and doing ok.  She still need total bedside care and cannot be transferred or she coughs and chokes.  So, it will be a few days in bed with many respiratory treatments and many DVDs and books to keep her company.  Thanks again for all your thoughts and prayers.


September 9, 2008 - Today I sit here in the PICU at Children's Hospital so very thankful my little Jenna is still with us.  She gave us a terrible scare and left us for only a short littel time, but what seemed like forever.

Jenna called out on Sunday evening around 11:30 pm.  I went to her room and repositioned her like I usually do.  I could see she had a lot of secretions she was trying to deal with so I tried to suction her.  It didn't help so I took her bipap off to cough and suction her.  This also didn't help.
Her heart rate began to rise then her o2 began to fall.  The next how many minutes felt like the end of the world.  Her sats continued to fall
and now so did her heart rate.  I kept coughing and suctioning while Paul was on the phone with 911.  Next I knew her o2 was at 24 and her HR at 51.  Looked again and she zeroed out.  Zero o2, zero heart rate.  All I could do was continue to inflate her lungs and wait for EMS. Thankfully, the are fairly close to our house and are already familiar with Jenna.  The paramedics bagged her with o2 and we got a number.  It was only 24, but it was a number.  At this time, while completely shaking, I got her bipap back on while EMS kept blowing o2 at her. Once her mask was on, we bled o2
thru her bappy.  Her numbers were coming back up.  We hooked up her machine to the o2, inverter and battery and I carried her down to the ambulance as the paramedics made sure her bipap and o2 stayed connected.  She stabilized on the way to the hospital and did ok in the ER.

Today she is doing so much better, off of o2, and a couple periods off of her bipap. She is starting with some GI issues so we'll see how that
goes over the next 12+ hours.

I decided to tell her story with detail so maybe someone will learn something from it - whether it be something to do with Spinal Muscular Atrophy, about special needs, hospitalization, or just being thankful.  I also want to thank all of you for your thoughts and prayers.  They mean so much to us.


September 5, 2008 - It has been a crazy week (but when isn't it?)!  The girls started school on Wednesday and love their new teachers.  Jenna started Pre-K today and did GREAT!  She sat up in her Special Tomato Chair for almost the entire time!  The only time she was down was when the kids went outside to play on the playground and Jenna was getting her stretches and ROM done.  She had a great time meeting her new friends and loved the crafts, games, and centers.  She cannot wait to go back next week.

Afterward, Jenna had an appointment with the pediatrician.  Although she doesn't show any sign of being sick, she has been running low grade fevers on and off for a few weeks now.  Today, she did not have one.  We did an at home UTI stick last night and it came out positive.  At the pediatrician's office it came out negative.  It did show sugar in her urine so they checked her blood levels and they were fine.  Her stomach is distended today so not sure what that is all about.  So...  we now have scripts for a abdomen xray, blood cultures, CBC, and urinalysis.  It is Friday afternoon at 3:00 and she is exhauted.  I cannot rush her out the door now to have them done and most places close at 4 pm.  So I am on a quest to find a place that is open to handle all her needs for the weekend.  Wish me luck!
Prayers going out to the sick kiddos:  Lizzy, Ally, Hayron, Deedee and Gracee.  Get well soon!



August 2008 - 3 years, 9 months
August 27, 2008 - Ok, ok, I will finally post an update!  This is for everyone who keeps yelling at me for not updating Jenna's site! Smiley emoticon
All in all, we are doing fine.  Many of you know that Jenna has a knee fracture.  Well, actually a fracture of the tibia way high up.  She has been complaining about her knees for awhile now.  I thought it was her contractures so I was treating those.  It started to swell and we finally had an x-ray done and it showed up.  We saw the ortho and he confirmed the fracture and advised us to keep her knee immobilizers on.  They weren't going to cast it because she is non-weightbearing.  So the poor girl probably had this for about a month and we didn't even know it!  Nothing even happened to make us think she might have hurt it.  She already gets a calcium, Vitamin D, and phosphorus supplements everyday, but Dr. Swoboda has recommended her having IV therapy after the bone heals.  We see the ortho again the middle of September for another x-ray to see if it has healed.  We also go to the Endocrinologist in September for her yearly checkup.  I would assume they would be the ones to set up the IV therapy. 
More exciting news!  Jenna went for her first real "big girl" haircut last week.  They moved the chair out of the way and we just wheeled her up to the station and she sat there like she owned the place.  I was waiting for her to ask to get her nails done! Smiley emoticon  With her hair being so curly, we ended up getting 3 inches taken off and it curled up even more!  It looks like she had so much more cut off than she really did.
Jenna's MAW pool is complete, well except for a deck.  We are going to build a deck to make it easier for her to get in and out of the pool.  The heater is nice!  She loves it.
We are waiting patiently for her new powerchair.  It is ordered so we are just waiting now.  I am hoping it will be in for her first day of Pre-K next Friday.  I guess we'll see.

Happy Birthday to all the August kiddos:  Charlie, Lily, Veronica, Mariah.  Hope you all have a great day!



August 4, 2008 - Whoo Hoo!  The insurance company reversed their decision on Jenna's new power chair!  This is fantastic!  The vendor and Permobile rep are coming tomorrow to do measurements and to get ready to order it!  This is just great!  She really is getting too big for her chair.  I bet by the time we actually receive the new one, she will be totally outgrown the other.  Each week she looks bigger and bigger!
We have also signed Jenna up for 2 half days of Pre-K.  She will attend from September to November and then be out for respiratory season then start up again in April.  This will be good for her.  She really needs the socialization and interaction with those other than ourselves. 
We are still working on Jenna's MAW pool.  Everything is up, but we are having a difficult time setting up the heater.  Hopefully today, but we will see.  We are also working on getting bids for a deck, which will make it easier to get her in and out of it. 
And last but not least, THANK YOU to all of you who supported us for this year's SMArt Walk for A Cure!  We had a beautiful day, despite the weather forecast and enjoyed seeing everyone!



July 2008 - 3 years, 8 months   

July 27, 2008 - Wow, have we been SO busy around here!  We have been working so hard to get Jenna's appeal information into the insurance company in regards to a new power chair.  She had to see a pediatric physiatrist on her "cognitive and physical ability to drive a power chair".  We received the info from the physician and sent it on it's way.  I do want to mention that on Jenna's cognitive exam, she scored as a 4 1/2 year old (she is only 3 1/2)!  Way to go JJ!  Also, we have been working on Jenna's MAW pool.  It was postponed a couple times, but it finally was put up.  Now we are waiting for the electrician/gas people to come in and do the wiring and the heater.  We are also getting estimates on a deck to make it easier to get her in and out. 

We just returned from our vacation at Sherkston Shores in Ontario, Canada.  This is our sixth year going and the kids absolutely love it!  All in all, the weather was good.  The first day we were there, it rained, but there was still things to do despite the weather.  Then there was only one other day it rained, but it wasn't a complete washout either.
The kids got to go swimming in the pools and the lake, which they all loved.  Jenna isn't a fan of cold water (yes, 80 degree water is too cold for her!), so she wore her "wet suit", which is a great product for her.  Mya and Kali wore out the waterslides too!  They just loved it.
The girls also enjoyed the beach.  This was Jenna's first year actually going to the beach and she absolutely loved it!  We found lots of cool rocks, she got to play with the dry and wet sand, and had a blast.
We also did a camp fire and made smores - another awesome adventure!  Jenna couldn't handle the smoke, so she didn't stay out too long, but Mya and Kali really enjoyed it.
There was lots of fun and games too.  Jenna won the jackpot on game and was just so excited to get all the tickets.  The girls ended up with their fair share too - a total of 3000 tickets!  That was a treat when it came time to pick prizes!  Almost everyday they had a Character Meet & Greet (which we met all of them, but only have pictures of a few) along with fun crafts. 
We didn't have a chance to play putt-putt or do the paddle boats, but maybe next year!
Please feel free to view our pictures:  http://picasaweb.google.com/meb0810/SherkstonShores



July 10, 2008 - Jenna is doing much better.  She has finished her antibiotic and is no longer on Zantac (for the irritated stomach due to increased respiratory treatments).  She did have a couple plugs yesterday, but is getting back up in her Kid Kart and power chair.  She is also back into the swing of things as "summer school" started this week.  Boy is she tired!  We have (re)started the Intal nebulizer treatment for her asthma.  It is a 3-4 x/day neb treatment, but hopefully it will help and she can get outside more often. 

Jenna had her exam with the Rehab physician for her "cognitive and physical ability to drive a power chair" exam requested by the insurance company.  Unfortunately she was sick, but we still went.  The exam went well and the physician was so very nice and helpful.  Now we are just waiting for the report so we can submit our appeal.  Yep, they denied us because of her "physical and cognitive" ability.  We will definately be fighting this one to the end as Jenna is growing out of her chair and won't have anything to sit in soon.  It is unfortunate that we, as parents, have to fight so hard for everything our children need. 

Jenna's Make-A-Wish was granted!  She wished for "water" so her heated pool will be installed this weekend!  How exciting!  It was suppose to be installed early this week, but there was a snag in the plans, so this weekend it is.  She is going to be so excited!  She just loves the water and it is so nice to see her in it because she can move SO much more.  Yesterday in Aquatic Therapy she was actually able to open up her arms real wide and then put them around me to give me a hug!  It was fantastic!

Prayers going out to Sophia who is currently in the hospital.  Get well soon!




June 2008 - 3 years, 7 months

June 28, 2008 - All in all, Jenna did great in Boston.  We got home Sunday and she was such a trooper for the 8 hour ride home (we ran into bad weather).  Her IEP ended on Tuesday so she had jammed pack therapies Monday and Tuesday.  Wednesday we were trained on how to use her Respirtech chest vest and had an allergist appointment in the afternoon.  Yesterday, the 5 of us went to the zoo for Jenna's first time and she loved it!  On our way home, she started sounding a little hoarse.  Well, before bed her HR was slightly elevated and this morning she was sleeping at 127  Of course she had a fever of 101.5 and very junky sounding.  We woke her and started a treatment right away.  I pulled out some real thick junk.  Her sats were ok, 96, but her RR and HR still high.  She came off bipap for a short period of time and went back on.  After her last treatment, she was satting 93 off bipap with her RR 50-60.  We are doing Q4 Xopenex with saline nebs in between at Q2 and ALL the other good stuff that goes along with treatments.  We called pulmo first thing this morning after that yucky, thick yellow stuff came out and she has started Zithromax.  Hopefully we have caught it in time and she will be able to remain at home.  Please say an extra prayer for her. 


June 23, 2008 - It has been a couple weeks since my last update and we have been pretty busy.  I switched Jenna's Zyrtec to a full dose and given at night (it makes her groggy) so that is going well.  All in all, Jenna is doing ok.  Her allergist appointment was moved up to Wednesday so that is great!  Hopefully he can find the right combination to help combat these allergies/asthma issues.

Jenna's IEP ends tomorrow.  So she will have 2 weeks off of services and then start "summer school" for 8 weeks.  She is pretty much getting the same as her regular school days, except special ed will be 2 days a week instead of 3 for the summer.  Tomorrow is also the last day of school for Mya and Kali too.  They are both real excited.
Last week we went to the FSMA Conference in Boston.  It was great.  The girls had a great time and it was nice to hang out with the families again.  For the most part, Jenna did really well.  We brought both of her chairs so she had a great time riding around in her power chair.  Friday I think she was in it for about 6+ hours and was doing great.  Saturday she had some issues with junkiness and lowered sats, but I think that had to do with all the dogs in the hotel.  I had to give her a couple extra respiratory treatments, but I was able to kick it before it turned into anything.  Mya and Kali had a great time and loved hanging out with Annabelle.  I will try to post some pictures soon - I am still working on unpacking.
We also have some excellent news!  Jenna's Quick Glance communication system was APPROVED by both our primary insurance and Medicaid!  So YEAH!  That is truly amazing!  The device was ordered so it is a matter of time now.
We are still working on the power chair.  We have not heard from Medicaid yet, but our primary insurance wants a letter of exam from a pediatric physiatrist.  This is going to be a challenge as she is not under the care of one and they want the report in one month.  It is very difficult to get an appointment with a new physician and a report generated all within one month.  Anyone who deals with specialists know this.  I have been back and forth with Rehab at Children's and I am working on it. 
Prayers going out to Ally and Jacob as they are in the hospital right now.  Get well soon!


June 9, 2008 - Well, we are thinking that a lot of Jenna's issues are due to allergies.  We have had the highest pollen count in the country over the last couple of months and I am sure this plays a big part with Jenna.  Temps have been around 90 so we closed up the house and put the a/c on.  Since doing this, Jenna has been much better with her secretions.  She is starting to sit up for short periods of time again and doing fairly well.  We have decided to take her to an allergist as Zyrtec just doesn’t seem to cut it.  Unfortunately, her appointment isn't until July.

Jenna has also been having issues sleeping at night.  This is getting very old as I am averaging about 3 hours of sleep per night.  She is cutting her molars so we thought this was the issue, but Motrin and Tylenol are not making a difference.  Last night I have her Hurricaine Gel as that has helped in the past.  Well not last night.  She was still up.  We have exhausted all our thoughts except for GI.  It is probably 90% of the case when she has had trouble sleeping in the past.  So early this morning, her formula was dumped and we are trying just Vivonex and water to see if this helps.  She is also going to see the pediatrician today to see if they have any other ideas too.  Hopefully she feels better before we leave for Boston! 


June 3, 2008 - All in all Jenna is doing fine.  We are still having a lot of issues with her getting junky, despite what we are doing.  I looked back at the calendar and it has been on and off for over 6 weeks now.  For the past week and a half though, it has been worse. She is getting crackly sounding when she gets up in her chair or potty.  So, unfortunately, she is down quite a bit these days.  We have switched from Xopenex to Albuterol as that seems to work better, she is still on the Pulmicort, and we have added Nasonex.  So far, nothing has changed.

We have so many things going on right now for Jenna.  We have submitted the paperwork for the purchase of the Quick Glance Communication Device.  It seems to work well for her and in many different positions.  We have also submitted the paperwork for a new power chair as Jenna has maxed out her Kid Kart.  I am trying to wait patiently to hear from the insurance company on that one. : )   We are also working on getting Jenna the Chest PT Vest thru Respirtech.  Our primary insurance improved it, yeah! and we most likely will be getting it in another week or two.  Jenna also seen the dentist for the first time last week.  She did great!  Unfortunately, she has two cavities and they will need to be filled.  
We will be attending the FSMA Conference in Boston this year.  Should be a good time and the girls are looking forward to it too.
Prayers going out to all the sick kiddos right now and those going thru surgery:  Addison, Sydney, Lizzy, Issac, Charlie, Stella and any others I may have missed.  My thoughts and prayers are with you!




May 2008 - 3 years, 6 months!


May 26, 2008 - Well that great new nurse is no longer with us.  I guess she had given her two week notice to the agency and no one told us until her 2nd last day.  Nice.  So we have been busy trying to secure a nurse so we'll see what happens.
Jenna had a couple tests done at the hospital this past week.  She was fitted for the Chest PT Vest and did great!  She was kind of scared initially, but then handled it fine.  So we will be working on getting this for her too.  She also had her Salivagram done.  This is where die is put in her mouth and they watch it to see where it goes.  Well, the test told us exactly what we already knew.  She holds her saliva in her mouth and swallows some and tries to control the rest - then looses control of it and aspirates.  She "held" most of her secretions, swallowed a little, and right at the end of the test she aspirated. 
As for this weekend, Jenna is junky again.  This has been an on again off again thing for what seems like awhile.  Today it doesn't seem like the Xopenex or Pulmicort has done anything for her.  Her heart rate is slightly elevated and as long as she is lying down, her sats are ok.  I sat her on my lap earlier and she dropped to 94%.  Right now she is napping on bipap and I think we will try the Albuterol tonight q4 and see if we can get this before it turns into something nasty.
For all of those who need remembering, Happy Memorial Day!




May 12, 2008 - May is half over and I have not updated yet!  Well, Mya made her first communion and she looked just beautiful!  She was very excited and I was so proud of her. 


We had a new nurse start this month too and she is great.  She is helpful and seems to know her stuff.  She has a lot of respiratory background too, which is great.  I really hope it works out as I can see her working with us for a long time.


Well we went out to Rochester for an Ortho appointment last week.  He did an xray of her spine as it has been awhile.  Can you believe her curve has actually gotten better?  She is now at only 10°!
This past weekend, Jenna started getting junky again.  You can hear some wheezes and crackles and she definitely has post nasal drip.  She started running a temp on Saturday and kept complaining of her ears and mouth.  I took her into Immediate Care and he said her ears look perfect.  She does have a red throat and the nasal drip.  He also said that her complaints about her ears could be throat pain radiating up her neck.  So we'll see.  She had a little better day today than yesterday as she couldn't get up at all.  She did fine on the potty today and in her chair for Special Ed.  It wasn't too long after being in her power chair for PT though, that her chest was junky again.  So she was down for the rest of day.
Many prayers for Amy tonight as her little girl "Lily" earned her angel wings and is with her brother up in Heaven.  It is so hard to hear another one of our children have left us.  These last couple of angels are truly special and inspirational.  They had beaten the traditional odds and have paved the way in the medical field on NIV protocols and other health care issues for our SMA kids.  Thank you girls, you will always be remembered. 


April 2008 - 3 years, 5 months

April 29, 2008 -  Wow, it has been crazy busy around here.  I am starting to feel as though I cannot keep up! : )
We had Mya's birthday party here and it was the High School Musical theme.  The girls made HSM no-sew pillows and had a great time.
Last week we had Jenna's IEP.  Surprisingly, it went well again.  I say surrpisingly because I hear so many horror IEP stories that it is crazy.  Jenna will continue to have services throughout the summer and next fall.  We have thought about a preschool program, but it is going to be difficult to find one that will actually do a split-year as she will not attend from Nov - April.  Everything else went fine.
We also had Make-A-Wish here last week as well.  Jenna told them that she wishes for "water".  She loves the water and swim therapy.  We are still working on her actual wish, but of course it will have to do with water!
Jenna went to the pulmo on Monday.  Once again, she had junk in her right lobe.  He is thinking she is having asthmatic symptoms and she was put on a couple meds: twice a day Xopenex neb and once a day Pulmacort neb.  Today she sounds pretty good, so maybe the nebs are helping.  He also wants her to have a Salivagram done at Children's Hospital.  It is a test where they place dye under the tongue and watch her for an hour to check for saliva aspiration.  He said this study should tell him if we need to go up on her Robinul or think of other options to control her secretions.  I guess we'll see. 
Many prayers going out to the family of Skylar S as she earned her angel wings yesterday.  My heart breaks for them and they will be in my thoughts and prayers!
Also many prayers going out to Ethan.  He has had such a hard time this winter and spring.  He is intubated again at Yale fighting a bacterial infection.  Get well soon buddy!
April 27, 2008 - HAPPY BIRTHDAY MYA!  You are getting so grown up!  I cannot believe you are 9 years old.  I am so proud of you and love you very much!  I hope you have a GREAT day! XO XO
 Happy Birthday



April 24, 2008 -  It has been an up-and-down week.  Jenna ended up going back to the pediatrician on Monday because she wasn't quite right.  It turns out she had a bunch of junk in her right lobe - probably from all that aspirating she did the week before.  She was on a 5 day antibiotic, then off for a couple days before this was found.  So... she went back on an antibiotic for the next 5 days.  Her lungs sound so much better today and she hasn't really needed the Xopenex, so that is good!

We have a pretty busy weekend coming up.  Our cousin is making her first communion and we have Mya's birthday on Sunday!  Wow! 9 years old!  I just can't believe it!

Our guestbook is finally fixed.  We had lots of trouble with spam and it is now fixed!  Please feel free to visit and leave a message! 



April 17, 2008 - Thought I would post a quick update...  Jenna is feeling better.  She was put on an antibiotic and her Robinul was increased.  The next day she started feeling better and is pretty much back to normal.  A little cranky, but you can't ask for everything! : )

I also wanted to say, "Welcome Home MJ!"  I am so happy to hear you have FINALLY been discharged after 70+ days.  You are such an inspiration!



April 15, 2008 - Maybe I spoke too soon... Jenna isn't feeling well.  We believe she has been teething and she definitely has more oral secretions she has been trying to handle.  Unfortunately she has been aspirating those secretions any time she gets herself upset.  It has been 3 times in the past 36 hours.  Well she is now running a high temp of 103.8, HR 150s, and RR 50-60 and is on bipap to help her breathing as she is laboring.  I am waiting for the pulmo to call back and we will hopefully be starting an antibiotic real soon.  And of course we are doing respiratory treatments regularly.

On the bright side of things, I have two new videos of her.  Click HERE to view them.
Prayers going out to all the sick kids out there:  Leah, Addison, Ally, Kyle, Ethan, DeeDee, Skylar, Sophia (surgery), and of course Miss MJ. 


April 6, 2008 - Again, it has been awhile since my last posting.  Jenna is doing great!  She is finally feeling better and she seems to have more strength too.  She is moving her arms a lot more, passing objects from hand to hand, sitting up longer, swimming by HERSELF (by moving her arms all the way open and then all the way closed), and "running" around in her power chair!  It is wonderful to have our JJ back again. 
The weather has finally broken and we have a had beautiful weekend.  Jenna is finally free of her chains and is outside again and lovin' it!  She has a new found freedom with her power chair and she knows it.  She controls where she wants to go.  When I help her turn around to come back home, she tells me no and turns herself back around again to keep going!  She also thinks she is riding her bike with Mya and Kali.  Too cute.
Speaking of power chairs, we are in the process of looking into new ones.  Jenna's Kid Kart is maxed out.  She has grown so much that there is no more room for growth.  Typically, these chairs are to last up to 5 yrs old, but Jenna is pretty tall.  We have a rep from Permobile coming in a couple weeks to look at our options.  Now to just convince the insurance company!

We are in need of a nurse for two days a week - 8 hour shifts.  This can be thru an agency or thru Medicaid's Private Duty.  Must be able to lift/transfer and I am willing to train on everything.  If you know of anyone who may be interested, please pass this on along!

The next couple weeks are going to be pretty busy.  We have Spring Break next week, Mya's birthday coming up, and her First Communion too.  I will try to update before the month is over, but we'll see!

Sun 2




March 2008 - 3 years, 4 months

March 19, 2008 - Wow!  It has been almost a month since my last update!  Jenna has been doing better over the last couple of weeks.  She is finally starting to get back to her old self again.  She is tolerating a little more in her feeds, which is a good thing, and getting her strength back.
Well her lift is finally complete.  We had a deck and lift installed in our garage and we had two of our doors widen to accommodate her chair.  This has been much easier getting her in and out of the house as it was very hard to get her up a snowy/icy ramp out back.  So that is done and working out great. 
Jenna has also been getting in her power chair more often and is doing fantastic.  She is really moving around purposeful and even maneuvers her chair enough to try and run you over! : )  I can't wait until the weather finally breaks so we can get her outside with it.  I am sure she will be chasing Mya & Kali down the street on their bikes this summer.
More exciting news....  We finally received Jenna's rental on her Quick Glance System (communication device).  It is great!  We had the Dynavox software loaded on it and she is doing wonderful with it.  She can use it sitting up in her Kid Kart, laying on her back, or side laying.  I have a couple pictures and a video I will put up of her using it.  This system is going to open up a whole new world for her.  She will be able to "talk" with it, do lesson plans on it, play games, use the internet, and eventually be able to turn the lights on and off and change the tv channel all with her eyes.  It truly is amazing.

Many thoughts and prayers going out to all the sick kiddos.  It is Spring tomorrow and there are still so many illnesses.  MJ, you have been thru so much.  I think of and pray for you everyday.  I cannot wait to hear the words that you will finally be discharged! 
Happy Easter everyone! 
 Egg 4 Egg 1 Egg 3 Egg 2 



February 2008 - 3 years, 3 months

February 25, 2008 - Jenna had a good day today.  She was able to get up in her chair for just over an hour today during special ed and speech.  This is a major accomplishment considering how the last 3+ months have been.  She also got up in her power chair today for PT and did well.  We have stopped the Albuterol/Xopenex, but she is still getting respiratory treatments a few times a day.  She is sleeping a bit better, not all the way thru, but much better as she was only getting about an hour or two of sleep each night.  I hope I don’t jinx myself, but I have added a 2.5 oz green bean last week and a 2.5 oz squash yesterday to her diet and so far, so good.  HR is good, sleep is OK, this is a step in the right direction.  It is nice to see Jenna getting back to her normal, which she hasn't been since before her surgery. 
Prayers for all the sick kiddos out there.  Prayers for you too MJ, can't wait to hear you being discharged.


February 20, 2008 - So much for those few nights of sleeping!  Jenna slept last night, which was the first since Thursday night.  She would be up all night with only an hour or so sleep.  She is still has quite a bit of secretions too and her diet hasn't changed at all either.  We took her to the pediatrician yesterday and he said that both of her top molars are coming in and ready to pop thru.  So we are guessing this is the reason for all the "illness".   Hopefully.  It truly is amazing on how teething effects our kids, like the whole swallowing aspect and how we have to protect their airway just because of a tooth.  These are things you don't even think twice about in a healthy child.

Many thoughts and prayers to all the sick kids out there.  And special thoughts and prayers for Miss MJ as she goes thru surgery today.  Sending you big hugs MJ!  I will be thinking of you all day today!


February 16, 2008 - Jenna is doing better, not 100%, but much better.  She is still dealing with a stuffy and runny nose, but that's about it.  Yesterday was really the first day I was able to get her up without choking - so that's an accomplishment all in itself.  We are still doing saline nebs as it really seems to help break up the sinus junk.  Since she is feeling better, we will be trying to work on her diet again.  She really hasn't made it back to full feeds since her surgery in December.  At this point, she is still on Vivonex and water.  Maybe we will try a few things this week and see how things go - maybe after a couple nights of good sleep as we all need it! : )

Many thoughts and prayers for all the sick kiddos!  And you too MJ!  Get well soon!

February 11, 2007 - So I guess it wasn't teething.  Last week it started as a little runny nose and then Jenna ended up pretty sick this weekend.  She had lots of thick yellow stuff, high HR/RR, 103 degree fever, and her chest sounded wet.  She didn't sleep much either, poor thing.  We had Cleocin here and started it right away and then touched base with the pulmo on call.  She prescribed Zithromax instead, which is fine as I am more familiar with it.  Any antibiotics effect Jenna's GI tract, so a lighter antibiotic (yes, can you believe Zithromax is "lighter" than Cleocin) is a good thing.  And of course she is getting q4 respiratory treatments and lots of coughing in between.  We are running feeds continuously so she gets more fluid to help her from getting dehydrated.  She pretty much is on continuous to begin with, 20 hours per day, but now we bump it up to always unless coughing, etc.  We have recently started using Xopenex instead of Albuterol.  This worked great for Jenna.  With a pulse rate of 150, Albuterol would put her at 170.  Xopenex didn't raise her HR at all.  She has been sleeping soundly since her 3 am treatment, so that is a good sign.  Hopefully she is on the way down.

Sending good thoughts and prayers to all the sick kiddos.  There are just so many out there!


February 6, 2008 - Happy Birthday HAPPY BIRTHDAY KALI!  My Kali turns 7 today!  WOW, I can't believe it!  Can't wait to give you your present and enjoy some cake!  I hope you have a wonderful day today!  We love you!   

Now for the Jenna news....

She is doing ok.  She had a couple desats today when getting up in her potty chair that required respiratory treatments.  It looks like she may be teething too, so maybe it is related to that?  She still needs one top molar and one bottom one.  Last night, she had her finger in her mouth quite a bit on the one side and she was MISERABLE yesterday.  She learned to say "no" so that was the word of the day!  It also could be a cold, not quite sure what to think.  I have a bit of a runny nose today, so maybe that's it.  It's no wonder considering it was close to 50 degrees yesterday and it is 30 today and is going to be 15 this week end.  With all this up and down, it could all just be sinus too.  This time I don't think it is diet as she has tolerated much since the last update.

We received some good news yesterday.  Some of you may know this, but once we switched our insurance the first of the year, the new company denied Jenna the Synagis Vaccinations (RSV).  We appealed this and so did her pediatrician. Well, the insurance company gave us a "final" denial.  Paul brought this matter to his employers HR department and supplied all the same materials that went to the insurance company, saying why Jenna is a candidate and why.  Well yesterday, it went to committee and, YEAH, they approved it!  So now they go back to the insurance company and say they need to approve payment.  That is GREAT news!  We have been working on this since the beginning of January and all the hard work is finally paying off.  It gets exhausting making all these phone calls, fighting, "proving" what kind of care Jenna needs.  Well, it was worth it this time!

Another thing going on is that we are getting Jenna a wheelchair lift in our garage.  We decided to go with the lift vs a ramp as it can be indoors (garage) and it can be removed if we happen to ever move.  They are also widening our door from the garage to the house and the one to the kitchen.  So it has been a little dusty this week, but it should be nice when it is done.   We have been using a suitcase ramp onto our deck, but when it's icy and snowy, it is too hard to get her up and down, especially for 1 person.

I want to send my thoughts and prayers to all the sick kiddos and those going thru surgery as there are so many right now!  We are sending big hugs and many thoughts and prayers!

Oh, and a very special Happy Birthday to Mr. Aiden too! : )



January 2008 - 3 years, 2 months

January 31, 2008- Well Jenna's cold symptoms turned out to be an intolerance to pears and pear juice.  It is amazing that you can ingest something for 2 years without problems and then all of a sudden cannot tolerate it anymore.  So we are still working on her formula.  I weighed her a few days ago and she is down almost 3 lbs now!  It is a good thing that she was overweight.  If most SMA kids lost 3 lbs, it would be detrimental!  She is still a bit cranky, but I am sure she is hungry too.  She has been on low calories for what seems like so long now.  Pretty much since surgery, which was a month and a half ago.  Hopefully we can get her back up on all her supplements and then work on trying different fruits and veggies. 


January 28, 2008 - Jenna must be coming down with something.  She started with extra secretions yesterday and her sats dropped a couple times, even while laying down.  They also dropped while sleeping last night so we had to wake her and do a full respiratory treatment - poor thing.  We started q4 treatments with Albuterol, CPT, Cough Assist, Postural Drainage, etc to try and nip it before it turns into something serious. 

For those of you following the GI saga... I added a 2.5 oz jar of Pears today and her cheeks started flushing after an hour of being on her feed.  This is one of the symptoms she had before stripping her diet.  Not sure if it is a coincidence, but I remade her formula without and we'll see if it goes away.

I am so shocked on how many kids have RSV this year.  Many of them had the synagis shots too.  What REALLY gets me is that most of these kids are on lockdown for the winter (like Jenna). So with that said, more prayers for little Miss Addy and now for Miss Sophia!  You are in my thoughts and prayers!


January 24, 2008 - Jenna is still dealing with GI issues pretty much since surgery.  We had to completely strip her diet down to just Vivonex and water.  This did seem to help and she is sleeping much, much better since then.  Her heart rate was jumping quite a bit, she didn't sleep for days and was pretty cranky.  Today is the last day of plain formula and tomorrow we try the juice for 4 days.  Unfortunately we will need to slowly add things back in to check for tolerance again. 

Many get well wishes and prayers going out to those who are sick:  MJ, Ryan, Zoe, Emma, Callie, Faith and any others I may have missed.  I hope you get well soon!  And very special Get-Well wishes for little Miss Addison who is in the hospital battling RSV.  You are in our thoughts and prayers!




January 18, 2008 - It has been a busy couple of weeks.  Jenna transitioned from Early Intervention to CPSE as of the first of the year and some of her services have increased.  She is now getting PT 2x/week, OT 2x/week, ST 3x/week, Aquatic Therapy 2x/week and a SEIT/Preschool Teacher 3x/week.  Busy, busy, busy! 

She has also been dealing with some sinus drip.  Those, like Jenna, who have issues controlling their secretions - this is not a fun thing.  She has had to stay laying down quite a bit or she gets up, coughs and chokes.  I put her on Sudafed and that seems to help.  She was even able to go to Aquatic Therapy today so that is an accomplishment.
Poor thing, I tried adding some more veggies to her diet and added a 2.5 oz jar to her 24 hour feed and the poor girl's body couldn't handle it.  You would think that such a small amount over 24 hours would be ok, but no.  This is common for some SMA kids as their bodies cannot handle change.  So when I try this again, it will be 1 Tbsp at a time. 
On a sad note, little Eden earned her angel wings today.  My heart goes out to the family along with my thoughts and prayers.  She was a beautiful little girl and now a beautiful little angel. 

January 7, 2008 - I am happy to say that Jenna is doing much better.  She still isn't on full feeds, but is doing much better.  I don't think her stomach was able to handle feeds after working thru her ileus, so we just had to start over again.  Right now she is on 3/4 strength and seems to be handling it fine.  Just a couple more days of this and we will try full strength again. 

Good news!  Jenna has a new cousin:  Arabella Grace, born on January 5 and 3.5 weeks early!  Congratulations to Uncle Kevin, Aunt Jennifer, and Serena on the new addition!  We love you! 
And a day early, but a Happy Birthday to Ms. MJ!!  I hope you have a wonderful day!
Prayers going out to Kyle, Emily, Eden, Taylor, Ethan, Kaitlyn, and any others I may have missed.  It is so sad that so many kids are sick right now.  Some with RSV, some with nasty colds/viruses, some just under the weather.  Also, many thoughts and prayers going out to Great Grandma Gullo - we love you!
And lastly, I would just like to wish everyone a Happy and HEALTHY New Year!



2007 Updates