Tuesday, February 14, 2006

Grace just wanted to make sure and wish everyone a Happy Valentine's Day!!! Last year on this day we drove to Dallas and picked up her manual chair. This year we're working on driving her power one. What a difference a year makes. :)

For those that hadn't heard...the MDA walk was a HUGE success. Our team alone raised over $5600...and we still had/have some donations coming in - so probably closer to $6000. The walk in all raised over $36,000 (over $11,000 more than last year)

Grace will be starting speech therapy next week. We think she's capable of saying more than uh-huh, uh-oh, poop and football (talk about a texas vocab). She'll be going to a recommended communication disorder facility to work on mouth muscles (they seem to be getting tight - doesn't open her mouth very wide), words and perhaps with some sort of technology. We don't mind using technology and some sort of communication device - we just want to make sure it is used to supplement and not as a crutch. She is also going to pick up an extra session a week of PT - to focus on driving her chair. YEAH!!! She's a busy girl. :)

She has continued getting her monthly RSV shots as there is a lot of RSV around the whole country this season. Next year we'll be fighting for these shots as they don't usually give them to children over 2. Her Dr from Utah called and she has a bit of a vitamin C deficiancy and slightly/borderline anemic, so will be starting on supplements for those. That extra iron will be great (hear my sarcasm) as SMA kids already have problems with constipation....OH WELL! :)

I think that's about it - not much has changed with her - which is wonderful! :) Thanks for continued thoughts and prayers! Happy Valentine's Day!

Wednesday, January 25, 2006

So, it's been a long couple of weeks...holidays, moving, Utah, first official TX FSMA chapter meeting, etc..Not really sure how Keven and I have kept from strangling each other, and it's been close at times, or getting one productive thing done. Must be the Grace of God....or sheer madness...or the fact that we just love each other too much... ANYWAYS....

Just thought I'd update a little about the Hospice situation. I fired them yesterday. I say it that way b/c the nurse came and I told her we weren't going to continue with the services, what did I need to do - she said I needed to fire her. So, I did :) She's really nice. And it was all about insurance for the firing reason. Turns out there is a lifetime limit on what they'll pay for hospice - $5000. Well, since we planned to be using them long term and not just "6 months" we would quickly hit that mark - with all the equipment and such. So we decided to discontinue it for now so that when/if we need it we are able to use it then. Course the downside to that being they're taking back all there equipment, which is fine b/c we still have the rented stuff, but means the hospital bed too. So, back to the drawing board on that one.

As for other equipment and battles...our insurance approved a piece of equipment, paid for it for a month, stopped paying for 3 months, then denied it, then paid another 4 months and is now saying they won't pay again...And of course it's one of the respiratory pieces, so it's important and of course it's the most expensive. So that's our battle this week. It's just frustrating b/c insurance is saying one thing and the DME says something - so going back and forth and conflicting answers...I LOVE IT!!! But they did get her chair going so we're working on driving. Hope to bring it to the walk next weekend. YEAH!

We did have our first Tx Chapter meeting and it went great! We got to meet a lot of people and there were 7 kiddos there. We seem to have a very energetic group with high expectations - for raising awareness, support and fundraising for research $$$. Looks like our first major fundraiser will be in June in Jonestown. We'll keep you posted.

Now, if anyone has a magic wand or pill for making more time, more productive, less overwhelmed, more energy, less weight...I know you'd be a millionaire. Or maybe just one that makes a person able to say no or let things out of their hands to let other people do it...less controlling...any of those...I'm willing to pay big bucks - not that I have big bucks but I figure there's no magic pill either :)

Umm...ok, I guess that's it for now. Sorry, I guess this email was more for me to let it out than for you to be informed. Thanks for "listening" :)

Friday, January 13, 2006

Another whirlwind trip to Utah. It was good though. Aunt Amy went with us :) - Thank you! We left Monday afternoon and got to the hospital about 7:00 that evening. Just hung out - met the family across the hall - they have a little girl that will be 2 this month - well she's not that 'little' - and she's a type II. They live in San Antonio and are very nice. We'll probably see them when we go back in April. Tuesday was the testing stuff - her bloodwork and the MUNE Test...They were pleased with how well she looks and seems to be doing - especially with the respiratory illness last month. ON the MUNE test she kept doing it over and over b/c she didn't believe it was as good as it was. ;) I don't know a whole lot about that test - but they see improvement, so that's good. It's looking at the electrical conductivity or something like that...Then we all went and took a nap and then went out to the mall. It was a gorgeous day - chilly compared to the 80s we've been having here but it was nice. Wednesday was the physical therapy part. She did pretty well. She cried through the whole thing. She usually fusses through it but this time there were actual tears. She has been so incredibly clingy since being in the hospital last month. Not that anyone can blame her - just makes this stuff all that much harder. She did pull the cloth completely off her face though - YEAH!!! - and turn her head both ways - YEAH!!! - showed a little bit of improvement. So all in all it was a good trip and they are pleased!! Another family in Tx is doing the trial - they have a long story with them - but the short of it is they have a 5 month old and got her started on the drug very early - like 8 weeks - here's what he had to say - "[she] is doing exceptionally well on the PBA. She can hold her head in line when pulled from her back to a sitting position AND when being let back down onto her back, she has very good head control, has turned from her back to her side on several occasions since X-mas, can raise her head when flat on her tummy or on her tummy at a slight incline, can get almost full arm extension while lying on her back and reaching upward for a toy, will bear some weight on her legs, etc. Her C-map improved from the 40's into the 50's since her surgery in late Oct & her max response on the MUNE was like 4.69, an improvement from about 3.30 in Oct. Doctor Swoboda was guarded in her optimism but very encouraged. She said she has NEVER had a type 1 generate numbers in those ranges at 5 months of age. Her swallow still seems to be strong and her respiratory fucntion is still strong. She has some very minor tongue fasiculations and her legs have some involvment but when all is said and done, we are very pleased at how well she is doing" So YEAH for them!!! She is doing some things that Grace NEVER did - so the drug is helping! :)

Alrighty...then we flew home Wednesday - were hoping to go out again but that day was nasty and yucky and we all slept instead - it started snowing as our plane was taxiing to the runway. Finally made it back to Hutto about 12:30 Thursday morning. Up Thursday and off for an MDA appearance at a Lock up...couldn't stay long - off to the pulmonologist. That appointment went pretty well. I did chicken out and didn't say anything about the hospice. Although he asked how it went and I said fine after they realized Grace has more than 6 months to live!!!! He said he knows they're a good resource and helpful at getting things and information...whatever I think he was back peddling. Anyways, Grace did well and didn't fuss much at that. He was very impressed with her - as she seems to be breathing easier than before the illness..hmm..drug help???...Said she's the  oldest type I w/o a trach or something that he's ever seen - and pretty much true for all the partners in the group - I've got some people I could introduce them too. That's why you don't tell us what it will be like! Don't they know that Grace got her stubborness from me and hard headedness and anything to prove people wrong!! HELLO!!! Messing with the wrong girl! :) But he was very pleased and she's doing great. Got her RSV shots too. Of course that brought tears, but she's so good.

So that's about it...we start back to PT next week as we haven't been since the first week of December - poor girl -her legs are so tight!!!. Wheelchair people are coming out next week to work on the pwr chair again too. She's doing great though!!!

Friday, January 6, 2006

Alrighty...the visit with the hospice nurse went much better than with the initial visit. First of all I was never trying to put down Hospice or what they do or anything. They are wonderful and a help/relief to many. I think it is great. I was just not happy with how we were thrown into it and the Dr assuming Grace had 6 months or less to go. And yes, that is generally how this group is done here also. It's in the end when you've given up the fight and just want to make the person as comfortable as possible. We're not at that point and the fact that the Dr was pushing us that direction and then didn't communicate with hospice that he was referring us - not us coming to them...it was just very aggrevating. Hospice is a wonderful service and I mean no ill-will towards it or all the hard workers they have. And we're part of it now, so... :)

Now, the visit with the nurse that will help with Grace went much better. She came in treading much more lightly and listened and understood. She sees, knows and agrees that we are not at the end with Grace. She understands that yes we want resucitation and we are still fighting here. I liked her approach and manners much better and was more comfortable with her. They do seem like they will be helpful to have and if nothing else more players on our team with Grace. I figure the more people watching her and helping her the better. It is not home nursing - she won't be coming several times a week to stay while I go do other things. She will come once a week and check on Grace and us and make sure we're doing ok and don't need anything. It will also be helpful b/c they will provide some of Grace's equipment which will allow us to return some to the DME and help lower our monthly rental bill on all of that. We also mentioned we wanted a hospital bed and it's supposed to be delivered hopefully today so that is a lot easier and faster than get a script for it and going thru insurance and everything. And an oxygen unit. So, they will be helpful in the care and comfort of Grace. And that is wonderful!! I just didn't like these people assuming we've given up and were at the end. They are so close to a treatment for SMA - not a cure, but a treatment, and we'll take that. Don't they know I'm too stubborn and bull headed to not fight? Come on now. :) So it is more positive now and should be a good thing.

Now, another thing I want to say - is thank you. I know I say it a lot, but I really mean it. We are so lucky/blessed to have so many people that care about us and especially about Grace. There has been some major ranting going on in our support group about people that have lost friends b/c they just don't know how to deal with a child with a terminal illness - so they just disappear - instead of just saying "I don't know what to say or do but I'm here for you and love you" - which so many people have done for us - they just leave. I can honestly say I can't think of anyone that has disappeared since Grace's diagnosis and I think that is truly a blessing. If anything it's the opposite with so many more people coming into our lives and touching our hearts. We understand that it is hard for all of you too - you don't know what to say or do or how to act...although we've been at it a year so we're pretty much over all that now...but we don't know either. And we still want to be here for everyone else when they are going through difficult times. It's give and take and we want to help all of you just as much as you have helped us. We're just living a day at a time and as normally as possible. And we may not always ask or tell you what we need but that's b/c most of the time we don't know ourselves. Most days are fine - we have a "normal" life :) We have therapies and doctors appointments, wheelchairs and feeding tubes and pretty much a whole hospital room (even more so after we get our hospital bed and oxygen unit) but she's as smart as a whip and just as testy as any other 2 year old. Most days are ok. It's hard seeing other kids, especially her age, doing things and running, but that's just the way it is and since we have so many friends with that age we just love their kids like they're our own too. We don't want to miss out on their lives and growing up and joys and sorrows. And we just deal with it - life keeps going everywhere in all sorts of ways. Some days are harder and we have our periodic breakdowns. But most people have periodic breakdowns just from the normal stresses of life anyways. No big deal. Although I am long over due for my last breakdown so if I just start bawling around you sorry ;)or more likely throwing things.. It's a learning thing for all of us. But we are so grateful and blessed to have so many people learning with us and fighting for us. THANK YOU EACH AND EVERY ONE!!!!!

We are off to Utah next week - Grace may get to see her first snow :) - we'll let you know how that goes once we're back.

Wednesday, January 4, 2006

HAPPY NEW YEAR!!!!!!!!!!!! Hope everyone had a wonderful and safe holiday!!!! Can't believe it's 2006 - here's to a great year ahead!!!

Yes, Hospice here, or when the lady came, is about making them comfortable in their last days. The booklet we received says "less than 6 months to live" Looking for "comfort and not a cure" So, we got off to a bumpy start. She just started talking to us like we're here to watch Grace die and we know all about Hospice. Wrong on both accounts. She told us some story about an 18 month old that the parents decided it was time to let go and what they all did in the final hours...I just kept saying things like "she's not going anywhere any time soon" I know we don't know when it'll be but nobody knows that with anyone!! She asked if we were set on keeping her at home from now on - I said unless she gets sick and needs to go to the hospital...she was amazed she'd only been in once for illness. EXACTLY!!!! HELLO!!!!! Course the best one I thought was when she asked why we decided to go to hospice now...I told her we didn't. We weren't given a choice - her Dr said we should talk to them and called them for us. We didn't choose any of it. I do believe she started getting the point though that we're not here to watch Grace die and we are still fighting. We showed her all of Grace's machines and what they do and all her medicines. We talked to her about a hospital bed so she is going to work on that. This lady was...I don't know..she was just doing the initial visit and all. Supposedly the nurse that Grace will have is coming out today. I'll be sure she knows right away that we're still fighting hard!!! So, it started off really bumpy and I just wanted to kick them out of our new beautiful house ;) but I think they started to get the picture, and it may be good just b/c they'll handle a lot of the insurance stuff and get us stuff...Like we'll quit using our DME and they'll take care of stuff. I don't know. We'll see. What I do know that 2 months from yesterday Grace will be 2 years old!!!! When we were first given her diganosis it was 80% die before age 2. It's down to 50% now and in 2 months Grace will prove that wrong too. :)

Thank you everyone and here's to a cure in 2006!!!!!!!!!!!!!

Wednesday, December 28, 2005

Grace has been chosen as a 2006 Capital Area MDA Goodwill Ambassador. :) YEAH GRACE!!!!!! There are actually 3 this next year - they had at least 3 great candidates and decided there's enough goodwill to ambass (yeah, I know...) that they could use 3. They each have a different MD and are all different ages. So, it's WONDERFUL!!!!!

Grace had an appt in Dallas last week for Scoliosis clinic. He is happy with how she's doing - she has a slight curve, but it's very flexible so that is very good.

She had a follow up appt with her pulmonologist from being in the hospital. He was amazed at how well she is doing. That she was out of the hospital in only a week - he thought there was no way - and the fact that she was already pretty much back at her baseline...he was just blown away. Then he told us we need to talk to Hospice. Yeah, I don't know...What I do know is that I hope for his sake Hospice means something different for a 2 year old than a 92 year old... She is still very worn out - with the hospital and holidays and all - and is sleeping a lot more than used to, but who can blame her. I would be too if I could :)

She had a wonderful Christmas, as we all did, and was totally spoiled by Santa, Mommy and Daddy, and all her wonderful Grandparents!! She has everything a 2 year old could want!! And then some...She got the concept that a present meant tearing off paper and there was a toy underneath. We helped her tear, but she got the idea! :)

AND...today we are closing on our house!!! YEAH!!!! So, starting this afternoon, Dec 28th, we will be out there painting away...and unpacking and who knows what else. We have several good days of painting ahead of us though. So, if anyone gets bored during this holiday break, or just wants a reason to skip work...you're more than welcome to come paint :) Or just come see the new pad and Grace's ramp into the front door. That's our favorite part of it all!!!!

Hope everyone had a wonderful holiday and has a Blessed New Year!!!!!!!!!!!

Tuesday, December 13, 2005

YEAH! We're home! Grace is doing wonderfully and we got to come home :) She is on antibiotic for the next week or so, but is good. They had put her on amoxycilyn but the bacteria that she grew is resistant to that. So she's on something else doing the trick. We also now have the nebulizer we'll start twice a day. And we'll take it a little easy the next few weeks, especially with the holidays being so crazy anyways...so she can heal completely. But the pulmonologist was very impressed with how well she's doing and how quickly she turned around. YEAH!!! (He's treated over 100 SMA patients) And, it wasn't from aspirating the food she shouldn't have been eating. :) YEAH! That makes us feel better, but we are definitely cutting back, almost out, oral eating. And he said to be real careful with her thru the holidays - since so many family and friends will be around - that's who she'd most likely get sick from...so when you see us, be sure to wash up first. :)  Thanks for keeping us in your prayers!!!

Sunday, December 11, 2005

Grace is doing much better. She is out of PICU and up in a regular room. They have her completely off oxygen - on room air - and she's keeping her O2 pretty well. YEAH!!! She's been having some really good coughing sessions - lots of junk rattling around in there. Today  they are going to start trying some time off the bipap. She has had it on nonstop since Tuesday - take it off for breathing treatments and that's it. Her poor little face is getting so red and worn from the mask. :( Her HR was still a bit high yesterday, but overnight and this morning seems to be doing better. She's also kept a low grade fever, but they're not too concerned with that since it is such a low grade one. She sat up a bit yesterday and made some animal noises and watched a little TV. We should be home, hopefully, the first part of this week. Then we'll basically be homebound the rest of the month - as much as possible. He said resp illnesses like this would put a "normal healthy" person out for maybe 2 weeks - you know completely recovery - so with her it'll be more like 3 or 4 weeks. So, we'll just chill out here, which is fine since we have so much packing to do anyways :) Thanks for everything everyone!!!

Thursday, December 8, 2005

Grace is still in PICU but doing ok. Keven and I came home Tuesday evening to update and get stuff and when we went back to the hospital they had moved her from a room down to PICU. Apparently she gave them a scare with her O2 dropping and turning a little blue around the mouth. But she bounced back up. So, we've been hanging out down there. She has been pretty stable though and actually happy at times. :) She has made some of her animal noises for us and watched a little bit of Elmo. Tuesday she had the 103 fever and they gave her tylenol - it went away and didn't start going back up until Wednesday evening, so that was good. We caught it at about 99.5 and gave her some more tylenol. Still giving her antibiotics...pneumonia...lungs look a little better in places and worse in other places, but not terrible. Some viral stuff in the middle/upper lobes and some atelectasis especially in the left lung. But that could partly be b/c she had so much junk in her right lung so she's been laying on the left side...Lower lobes look a little better. RSV tests came back negative, so that was good. They were deep suctioning her in the middle of the night to get a good "loogey"- yes it's a medical term :) - so they could test it for stuff. So, basically we're just hanging out. Her HR is still above her baseline and her O2 is staying up with the help of added O2. They have lowered that amount though a bit, so that's good. She is doing breathing treatments every 4 hours - nebs/CP/cough assist...tube feedings every 4 hours and they're going to go ahead and change her button while we're there too :) We're waiting to make sure she's good and stable and then move back up to a regular room on the floor. Thank you for the continued thoughts, prayers and support - it is definitely working!! Poor girl isn't used to wearing her BiPap - the most she usually wears it is over night - 8 hours maybe? She's had it on pretty much non-stop since Tuesday around 7 AM. Her cute little face is getting all red and rubbed. :( She's a trooper though! THANK YOU TO EVERYONE!!!!!

Tuesday, December 6, 2005

Well, unfortunately now Grace is in the hospital. She was coughing a lot, hard time breathing, elevated heart rate, low oxygen....played phone tag with doctors all day. Pediatrican finally called and told me to call 911 and gether to the ER. So, she and I took our first ambulance ride. Not good for someone with motion sickness, but I digress....we got to ER...she's been on BiPap pretty much all day...they hooked up some oxygen to it...was running 103 fever, x-ray of chest showed problems in the right lobe...white blood count is elevated....For now they are treating as pneumonia with antibiotics and fluids...are running more tests to make sure it's not something else. We are at Children's Hospital in Austin for however long the need be...So, keep those positive thoughts coming this way please!

Thursday, December 1, 2005

Well, it's been quite a busy week...

Sunday Grace awoke with a fever of 102 and a high heart rate. She didn't act too unhappy or uncomfortable, a little lethargic, but that's it. Monday AM it was 99.3 so we cancelled PT and then the fever went down from there.  There were no other symptoms so we have no idea. However now she and I both are battling something - allergies or a cold...she has a cough and chest congestion. That's one of the worst things for her, but her lungs still sound clear - most of the junk is in the throat, top of the chest. So while we usually cough (use her cough machine) 2x's a day - I think we used it no less than 12 times today. Just trying to keep that stuff from settling in or her aspirating it.

Tuesday we had a check up appointment in Dallas with Dr. I. We saw her, a resp. therapist, PT, OT and...someone else I think. They were all very pleased and impressed with how well Grace is doing. How much movement she has in her arms and head, how well she can sit in her chair, how many animal sounds she can make, and how well shaped her chest is - one of the effects of SMA is a concave chest cavity. And they weren't concerned about the fever she had Sunday and Monday, especially with it gone by then and no other symptoms. We will probably be starting private OT soon so she'll have PT,WT, and OT once a week each. And we're probably going to do a speech evaluation and see if we need to start speech therapy, work on assistive communication devices, or chill out. :)

Thursday she got her power wheelchair. YEAH!!! Now let me just say this is the Rolls Royce of power chairs. I was at work when it was brought over and I got home and man, I was just blown away. He's coming back tomorrow to show me how to use it. It's purple like her manual chair, although the picture looks blue....Has her name on it :) , on the back  is hand controls for Keven and I. That way if she hasn't learned yet or is asleep or tired we can drive it from back there. It doesn't have her joystick yet, BUT it's so cool b/c it has a little tray in the front and you just touch the spots on the tray and it drives. WOAH!!! I must be easily amused, but it's crazy! There are still some glitches with it and they'll be working on it over the next week to get them fixed and get her a joystick to use.

Hope everyone has a wonderful December. We go back to Utah in January....YEAH!

Wednesday, November 2, 2005

Grace is doing pretty well. She's had a lot of extra secretions and drainage lately, like so many of us do this time of year. So we've been having to do extra cough treatments and suctioning, but she's good. Her recent chest x-ray came out clean and her heart rate has been better - not as wacky as it was... We have also purchased, thanks to that wonderful garage sale and generous people, a used portable pulse-ox and suction machine. We have those at home from the DME company but they are huge and a pain to move and aren't really portable. But her Heart rate has been a little wacky lately and the extra secretions - we needed something for in the van and for our many travels. So we got those this week and should be a huge comfort/help to us.

She was also supposed to get her powerchair last week - but turns out the most important part - the joystick - wasn't ordered with it. SO it'll be a few more weeks on that. The good part is we've met every possible deduction for the year so there shouldn't be any kind of copay on it. YEAH!! :)

It's also time to start getting our team together for the MDA Stride and Ride walk again. A lot of you participated last year - at Barton Creek Mall at the beginning of March. This year it's going to be Feb 4 at Highland Mall. Last year we had one of, if not the, biggest teams and were one of the top 2 money raisers. We have challenged the other team this year, all in good fun and to raise more money, that each of our teams raise at least $5,000. We can do it!!! Last year we raised, I believe, $3,400. They have also added a new tool this year - with websites for each team that will enable people to make their donations online. Once we get our website set up, I will let you know. Then you can email everyone you know with that info :) It'll also list all the ways the money helps MDA which helps so many people and other information on MDA. We do plan on making Grace t-shirts again this year for all our walkers, and if you raise $65 you get an MDA shirt too. KXAN has been great with the MDA telethon and now they're partnering up for the walk too! so we'll have lots more coverage, hopefully, and the reporter that is helping us is ready to help and open to ideas! So, let me know if you want to walk and I'll get you a packet of information and stuff. Or you can become a team captain too and have your own walkers. Yes, you can raise money and not walk too...so many options :) We're excited!

Another exciting note - well to me - I have been working with a few other people in Texas and we have just gotten word that we are official - we have started a Texas chapter of FSMA (www.fsma.org) YEAH!!! Hoping to get some fundraisers going and spread awareness. Pretty cool!

I think that's about all the excitement around here. We go to Dallas at the end of November and then to Utah in January. Thank you everyone for keeping us in your thoughts!!! It really works/helps!

Tuesday, October 18, 2005

The nominations are in and Grace is one of the kiddos in running. For what??? For the Local Goodwill Ambassador for the Capital Area Chapter - for MDA. AND, she was nominated for the state ambassador position too! How cool is that?!!!! We have to fill out a form and send it in with some pictures by Nov 1 and then hold our breath... :) But that's so cool! "It's just an honor to be nominated" ;) Watch out Jerry Lewis! :)

Grace is doing ok. She's been extra tired and her Heart Rate has been elevated, but she just got a flu shot so it may be a reaction to that. And we're going to back off on the amt of the trial drug she's getting. We'll see. But just wanted to share our excitement. :)

Wednesday, October 12, 2005

Well, we just got back from Utah. The only good thing about getting home at midnight - Grace went right to sleep :) It was a good, and pretty uneventful trip. We flew in on Monday, spent the evening hanging out in the hospital. Tuesday morning we did the blood work and MUNE again...everything went fine. They are still very pleased with how Grace is doing. We went out that afternoon and walked around part of the city. It was pretty, but we should have walked more in the City Center/Temple Square area, but...oh well, I digress...Wednesday morning was the PT exam. Keven took her to that by himself, as Grace did not sleep well the previous evening, which meant I didn't sleep well and awoke with a migraine. But anyway...She did ok there. Keven's turn to give blood was that afternoon...they're banking our blood until they get further funding and can continue a natural history study. They started one, but have run low on funds...but they have discovered people that don't follow the "rules" :)

We start the actual drug tomorrow, Thursday. She will get it 4x's a day...all her bloodwork came back pretty normal. There were 2 things that were off - one was a little low, which Dr. Swoboda sees a lot in SMA patients, and gave us a supplement to help level it out, she'll get that 2x's a day, along with her zantac 2x's a day and miralax once a day.... Not a big concern, just something to watch. And one of her liver functions was off, but again, Dr. S said she sees that all the time in SMA, doesn't really know why, but at the level grace's was she's not concerned - they'll just keep an eye on it. We don't go back until January. Then Grace will get her first experience with snow! :)

Something we did learn is that you can have a half of an SMN gene...They were questioning Grace's SMN copy results b/c they got 3 and Dallas got 2...they asked the person that did the test and he said yeah, there was like a smudge, so she may have 2 and a half...how bizarre! Who knew?! But Dr. S said that yes, it theoretically could happen. So they're going to look at her results again. How bizarre though to have half a gene...

We met another family there with an 11 month old, from New York. They were very nice and Jenna, the daughter, is a strong type I like grace. She was so cute! She has 2 older sister's at home (unaffected) and they just got her diagnosis like 3 months ago. They were very nice and we talked a bit with them.

Off to the pulmonologist Thursday morning and it should just be a routine check up along with perhaps her RSV and flu shots. But that should be about it. So, all is well on our front! :) Hope everyone else is doing well and staying healthy! I know there has been something going around and lots of illness...we'll keep everyone in our thoughts and prayers!!

Here are some other SMA happenings...

Last week they filmed an episode of Extreme Makeover Home Edition - for a little boy with SMA. Although it would have been nice for it to have been our house :) we're glad that SMA will get some national mentioning and help raise awareness. It is scheduled to air on Dec 11th, but will let you know if we hear any different

http://www.dailynewstranscript.com/localRegional/view.bg?articleid=64653

Here's a link about a documentary - some of you have already recieved an email about it, but for those that haven't....check it out. Hopefully it will be playing at Dobie and/or Alamo Drafthouse sometime in November. We'll let you know!

http://39poundsoflove.com/main.html

We have had several losses in our SMA Support group. Actually they're friends of friends, but it still hurts just as badly - knowing that this awful thing has taken another life. Please keep these families and friends in your thoughts and prayers.

Rhine Andrew Oliver was born on 25 March 2003 and was set free from SMA Type 1 on 2 October 2005. (South Africa)

Another angel passed away at 2:30 am (Oct 7) Christian May age 8 3/4 months. He is the son of Jim and Kristie May from Quincy,IL

And a lady in Round Rock whom I had emailed a few times, her son was to start Kindergarten this year..last I heard from her was the first of August and she was raving about how well he was doing. He passed the week before school started.

Here's an article written by a highschool student from McAllen Texas - he has SMA. I liked the article. thought I'd share

http://olive.themonitor.com/Repository/ml.asp?Ref=TVRSLzIwMDUvMTAvMDYjQXIwMjUwMw==&Mode=HTML&Locale=english-skin-custom

Tuesday, October 4, 2005    

We had such a great weekend! We went up to Dallas and got to meet lots of people. Saturday morning we got to meet and hang out with Jana and Kyle. Kyle is 11 months old. He and his older brother are just too cute. Then that evening we went to an SMA/MDA fundraiser. We got to re-meet some families and meet lots of new people. Grace wore her beautiful white angel dress and was the belle of the ball. We had a wonderful time! 

We're off to Utah next Monday. Keven gets to go this time. He's excited, as are Grace and I. 

Big UT/OU game this week! Hook Em Horns!!!

Friday, September 16, 2005

Ok, I received 2 exciting bits of information today that I had to share! They are so good!!! I mean, even the huge Mt St Helen zit on the side of my nose that is throwing off my entire balance and visual perception is "an I DON'T CARE" after this news!!! :)

I got the mail today and in it was our approval letter from the insurance that coverage is approved for Grace's powerchair!!! Yeah! We have the one we borrowed and are so grateful to have it, but it'll be wonderful to have Grace's very own made just for her!!!! YEAH!!! It'll still be a couple months before we get it, but now the ball can start rolling. :)

Then read this little blurb from FSMA:

Researchers have identified the SMN1 gene as the primary manufacturer of the SMN Protein. It is the absence/defect of this SMN1 gene that causes Spinal Muscular Atrophy. However, there is another form of this gene called SMN2. The SMN2 gene is similar to SMN1, but does not produce as much protein, or the right kind of protein, as the SMN1 gene. One determination of prognosis is the number of copies of the SMN2 gene. The greater the number of SMN2 copies, the more SMN protein is produced and the greater likelihood that more motor neurons remain healthy and productive. Individuals with only 1 or 2 copies of the SMN2 gene will typically have the most severe expressions of SMA. Three or more copies of the SMN2 gene will typically mean a less severe expression

When we were in Dallas they did blood work and supposedly Grace had 2 SMN2 genes. WELL...today they emailed from Utah today - from Grace's blood work - they said she has  3  SMN2  copies. YEAH!!!!!! That doesn't guarantee anything, but it does give a lot of hope!! :)

Monday, September 12, 2005

First - the MDA telethon. We had a great time! Grace was quite a hit with everyone there. Thanks to everyone that called in and made a donation!! They're getting close to a cure. The neuro in Dallas said they're hopeful of a treatment in the next 2-3 years, so that's very promising! And those of you that walked the Stride and Ride with us...this year it's the begining of February - Feb 4th I believe...Last year our team raised $3400 and was one of the top 3. This year our goal is $5000! We can do it! :)

Utah visit went very well. Mom, Grace and I flew in on Wednesday. We stayed at the hospital and were just nice and lazy and didn't do a darn thing. :) Next time maybe we'll venture out - there's a lot to see there. They were all wonderful!  We really like them! We met another family there from Cuba, and one from Maryland.

ANYWAY...they were very impressed with Grace. The fact that she's never been sick, knock on wood, or had a hospital stay except for her GTube surgery. They did a DEXA scan - measure bone density and muscle mass...SMA kiddos tend to have less dense bones, and get broken bones very easily... hers are less dense, but not horrible and look good for her age. Her muscle to fat ratio was good. It's better to keep SMA kiddos a little on the lean side b/c extra weight is just fat - not muscle - which makes it harder to move and breathe and wears them out faster. Grace has lost weight in the past view months so she looks very skinny to us, but they said she looks great.

We are doing a 3 day food journal that a nutritionist there is going to analyze and make sure she's getting enough calories and all that she needs.  I'm very thankful for that! So, then we did the MUNE test (measures electricity in/btwn the nerves..) - which they had done in Dallas too. They gave grace a little bit of a sedative...it made a world of difference during the MUNE and blood draw. And the neuro that's doing the study - she did the MUNE, the blood draw and talked to us, she's very hands on. Plus it took like a quarter of the amount of time it did in Dallas, thanks to the sedative. And she told us what she saw! She said she's between 3-5 range, on the MUNE, which means nothing to me...don't know what it means. But to put it in terms that are important - she said that type I's usually are in that range....at about 4 months! By 18 months they would be a lot lower!! So she was impressed/pleased that Grace was still that high. Blood draw was no problem since she had a little medicine and they did it in her leg...she watched videos and danced through the whole thing :) Then she had the PT exam, same one they do in Dallas... she fussed through the whole thing - and who can blame her. :) But she did very well and the PT was surprised to see her hold her head up and move it around so much. So, all in all it went very well. 

Friday, September 9, 2005

Well...we heard back and we're doing the Utah study!!! Actually Grace and I will be flying to Utah next week - Sept 7! What a busy week next week! But it's such a great opportunity we couldn't pass it up! I don't know all about the study yet, but we'll let you guys know as we know. Here's an article about the drug - the sodium phenylbuterate....We'll see!

http://deseretnews.com/dn/view/0,1249,600131828,00.html

Wednesday, August 31, 2005

One year ago today our worlds were shattered. Our hearts were broken. Our breath was sucked out of us. Our dreams were crushed. Our lives ended. We learned pain like we've never known, and hope so many people never will. One year ago today our daughter was given her death sentence within 18 months....

One year ago today I learned you can't plan life. I learned to count my blessings. I learned to fight with all I have. I learned how lucky we really are.

One year ago I learned that nobody knows anything for sure.

One year ago today our lives changed forever...We were given Grace's SMA diagnosis. We were told she would probably not be here today and that 80% of children die before they are 2. We lived in a fog for quite awhile after
that. Denying it. Hating it. Crying. What else would you do? And the things that I said I learned 1 year ago...more like I learned them over the following year. I didn't learn anything that day except anger and depression like I had never known!

But look at us today!! Nobody knows anything for sure - not even doctors. Grace is doing amazingly!!! We are so blessed and lucky to have her in our lives. So many people don't get to have near as much time with their children, sometimes none, whether it be SMA or something else. She is here for a reason and although she has already taught me so much and touched so many...I believe she is far from done! We have gained more than we ever thought imaginable! How to embrace life. How to appreciate what we have. How to live while you can live!!!!

We have also gained a whole new family - our SMA family! At times they are closer to us than our own family - only they can understand, relate, support and reach out...in ways that others can't. We are so thankful for them and
owe them for us being here with Grace today! (Not that our own friends and families haven't done everything in their powers - and have been tremendous - and we definitely wouldn't be where we are, and as strong as we are, without them - they're amazing!! We are thankful for them too!!!)

Anyways...today is a day that we will ALWAYS remember. Good and bad - it will always be...

Now then...as for an update...this past weekend we went to Dallas. Saturday night we went to Odds on A Cure fundraiser for FSMA. We got to meet several families from the Dallas/Ft Worth area. It was great! Just to meet
more people and see all the people there reaching out to help! It was a lot of fun too!!!

Monday was Grace's final appt with her drug study. She has been off the rilutek for 3 months so they were doing final blood tests and pt tests. Now, she can go back on rilutek with a Rx, if we choose to do so. As of right
now, that is our plan...however, they have seen more luck with another drug and I've heard there is a trial of it happening in Utah. So, I'm looking into that to see if she can get in there...

Her spirit/attitude have changed since her GTube surgery. She screams all through all her therapies - even water, which she loves. She doesn't cry - just screams. She doesn't want anyone messing with her. I think this is partly b/c of the surgery and being scared. Partly b/c her legs have gotten tighter so it hurts more to stretch and do things. Partly b/c she's almost 18 months old and partly b/c her molars are coming in. She has 1 all the way in. One 3/4 of the way and one just barely poking thru. So...she's pretty fussy a lot of the time.

She is so smart though and has learned many animal sounds - including dog, cat, sheep, cow, snake and lizard. Of course she knows a car too. Has started saying "more" in sign language. Blows kisses. Says "roll over" when we roll her over...well..that's what she says in her language :) She can show you where her eyes, nose, mouth, chin, neck, ears and hair are. She is just SO SMART and quite the ham, when she wants to be. Turns out my name from her, what she calls me, is Ada. Not sure why or how, but that's who I am. :)

Thank you to everyone for everything!!!!!!!! We could never thank you enough. We are so blessed and lucky and unworthy. Thank you everyone!!!!!!!!

Tuesday, August 23, 2005

Well, we had a great trip to Virginia. It was definitely too short, but lots of fun. We got to meet about 15 families - Grace was the youngest one there, Charlie turned 2 on Monday - he was closest in age - Oldest was MJ who is 17. There were both type Is and type IIs there..and quite a spectrum even within the types. It was nice to put faces to names of people we know...and nice to be around people that understand and know and...just get it.

We got to watch someone change a Mic-Key button, so if Grace's should happen to fall out before her next appt we know what to do. After that appt we will change it regularly on our own. It looks easy, but pretty gross. :)

It also helped remind us of how lucky we are and blessed with Grace. We always thought she was pretty strong and this helped us remember that she is. August has been crazy busy for us so we've both been stressed and exhausted and so that leads us to a down cycle...we get them every so often - who doesn't?. So, it was good for us to be reminded about how truly lucky and blessed we are.

We had a butterfly release in honor of the SMA Angels in heaven, and a candle lighting which is an annual event. We had birthday cake for Charlie and Angel Jacob. There was karaoke and face painting, pizza and toys...Oh and this amazing photographer came and took pictures of each of the kids -she started a non-profit org http://www.johnathansjourney.org/  - she is going to send each of us a CD with all the pictures she took - for us to do as we please, PLUS we can pick one picture and they will put it on a canvas and frame it for us. All free of charge! She's incredible!!! Her website is  http://www.cindi-broome.com/

But it was wonderful. All the kids are just amazing!!!! There truly is something about each and everyone one of them. SMA should stand for something else...I don't know...Special Miracle Angels....something b/c that's what they are.

Grace recieved her quilt from Cole's Quilts - it's a group in memory of Cole - they sew quilts - different people from all over sew a square - the theme can be picked by parents - and then they are sewn all together. http://www.our-sma-angels.com/colesquilts/   The waiting period is about 2 years, but they bumped ours up since we were going to be at the gathering.  It's gorgeous!! 

Oh, she also got a power wheelchair. We are borrowing it from SMA Support, until she can get her own. She did a few backwards circles at the airport. I need to take her to an empty parking lot to practice - our house is too small. Once we get some practice going we'll share some video clips...if we can get the stupid video camera to work - we took it this weekend and it did not work at all.

Monday, August 8, 2005

The garage sale was a HUGE success!!! We raised much more than we ever could have imagined. Thanks to everyone that helped, donated, thought of us, or just kept us in mind. :) It was a lot of work for a lot of people but definitely worth it! We are so thankful to all the help! The winner of the Quilt is Karen Mills and the winner of the Mary Kay basket is Joan Carpenter. Congratulations ladies!!

We have several things the next couple of weeks. This Wednesday News 36 will be out to interview us for the MDA telethon in September. How exciting! 

Next weekend, 18-21, we are going to Virginia Beach to an SMA Family Gathering. We get to meet all these people we've been talking to in our on-line support group. It's going to be wonderful! We can't wait!! And...one of the families just got their new power chair, so they don't need the loaner chair they were borrowing, so we get to bring the loaner home with us!!! YEAH!!! So Grace can start learning to drive very soon!!!! She'll be a pro by the time she gets her very own.

The weekend after that we head up to Dallas for an SMA fundraiser and Grace's appointment at Scottish Rite.

The weekend after that is the MDA telethon! So, we plan to be busy the next few weeks!

Grace is doing well with her button and we're getting better at the pump and feedings. I am working with a mom in our chat group on getting a diet going for Grace. I'm almost there. :)

Thank you to everyone!!!!!!

Thursday, August 4, 2005

For those that missed it, or aren't in the area - here's the link to watch Grace's news clip. http://keyetv.com/medwatch/       That'll take you to the page and then click on the SMA story. We also were asked this week to be a featured family on the MDA telethon in September! We will just be here with our local station doing it, but hey..watch out Jerry Lewis - here comes Grace! 

Grace had her follow up with the surgeon today. It was short and sweet. Said she looked good and she's ready to swim again!!! YEAH!!!

Friday, July 29, 2005

Yeah! We're home!!. Grace is snoozin, which is probably the best thing for her. She is doing great. We are supposed to get our equipment later today, but have supplies that will last awhile, so we're good. Now to start digging out of the house - we're buried in garage sale stuff!! And I say that as a praise, not a complaint - it's going to be WONDERFUL and a HUGE SALE!!!!

There's just a plug in the button and when it's time to feed we unplug it and put in the tube. Pretty cool. There is still a piece ofgauze under it, as it's still a little raw and leaky, but that won't always be there. And then the other little incisions where they went in - including her belly button!

Thanks to everyone for all the calls, cards, emails, support, etc....I think we could say thank you til the day we die and it would never be enough. THANK YOU!!!!

Wednesday, July 27, 2005

Grace is doing wonderfully. They started her feeds today through the tube. She is tolerating it well and her stomach is processing it properly and doing what it's supposed to. They are slowly increasing the amount she is receiving and we are striving to 40ml/hr. She's at 20 right now, so we have a ways to go - they are increasing by 5ml every 4 hours. She was back to her old self today - laughing, talking, reading, playing cards...her usual self. It was good to see her that way again. We most likely will not be home before Friday. They still have a ways to go on the feeds and we don't have our equipment yet and we haven't learned how to clean and take care of her button....so I don't suspect it'll be Thursday.

It did break my heart though when she heard the words drink and ice cream and got very excited b/c she wanted them...and couldn't have them. And then a KFC commercial came on TV and she was just staring and wanting it so badly!! As soon as we get home she'll be getting some ice cream. :) She will be allowed to have a few bites of food here and there - just for pleasure, but her main source will be through the tube. And should her swallow get weaker then she'll have to stop the pleasure eating too.

Monday, July 25, 2005

Grace's surgery went well this AM. We arrived at the hospital at 6:30 and checked in, did our pre-op stuff, spoke briefly to the Doctor and anesthesiologist. They took her away for surgery at 8. It was just a little over 2 hours long.

They went ahead and put in the button, so that is nice. Since this is for a lot of different people - what that means - is the feeding tube they put in - sometimes they leave a peg out and later go back and add the button (Mic-Key). They were able to go ahead and put the button on so we won't have to do that later. 

Her esophagus was thin and weak and did tear some when they put the tube in and all. But he put in a few stitches there and when they did the nissen it covered it up. The nissen is when they wrap the top part of the stomach around the esophagus to close it up a little - to stop reflux. So they wrapped it around where the stitches are and it should be fine. He did not seemed concerned about it and said everything went well.

She is at the hospital now sleeping peacefully...or drugedly :) (We ran home for a brief time - mom is up there with her) She really hasn't woken up since then, but who can blame her! They have her on pain meds and she's getting fluids through the IV. We won't use the tube/pump until Wednesday.

We ended up not having to go to ICU because she did so well and is still doing so well. We are in the intermediate care - more than regular room but less than ICU - because she is on BiPap. They like to monitor her more closely. 

Keven is being strong with the help of his Super Dad shirt. I am being strong with the help of caffeine. Thank you to everyone for all the calls, cards, emails and food! We are so lucky to have so many people that care about us, and most importantly about HER!!! THANK YOU!!! We will probably be in the hospital until Thursday or Friday...it just depends on how things go.

Just a heads up - August in SMA Awareness month. I'll be happy to send anyone information that is willing to post it somewhere for others to learn. Help spread the word so we can find the cure!

Again thank you all so much. We are so glad the first step is done with!

Now on to recovery! :)

Thursday, July 14, 2005

Grace will be having surgery Friday, July 22nd at Austin Children's Hospital. It will be 2 surgeries - the G-tube and the nissen. It'll probably take about 2 hours - we don't know what time it will start yet, they'll call us next Thursday and let us know. She'll go from surgery to the ICU - this is routine and is just so they can keep an extra eye on her. We are very thankful that all our doctors are so willing to work together and be resources for one another. On top of the usual concerns of surgery - SMA kiddos have to be more careful about what anesthesia is used (anybody with neuromuscular diseases from what I understand) and then then extubation back to her BiPap - since respiratory is such a concern. Thankfully Grace is very healthy and very strong respiratory wise so hopefully none of that will be a problem. We'll update as soon as we can after surgery and all. Thank you to everyone!!!!

Wednesday, July 13, 2005

Ok, I was trying to wait until we knew when the surgery would be before I updated again ....But, a lot of people have been asking, which we're so thankful to have so many people that care, so....The doctor called on Monday and he had spoken to Dr. I in Dallas and they have decided to go ahead and do both the G-tube and the nissen. It stinks b/c it's 2 surgeries now, but I'm glad they'll be doing both and we won't have to worry about it. Talking to mom's of other SMA kiddos this is the best way to do it. So, they decided there's no need to do the reflux test they had planned and to just go ahead and schedule the surgery. We are waiting to hear when surgery will be. We have called and asked each day this week so they won't forget us - we're anxious to get it over with - when we know when it will be we will let you all know. It will be at children's hospital in Austin and will probably be a couple of hours long and we will be there for several days...that's as much as we know right now. 

On a different note - Grace's Garage sale is in the works for August 6th - it will be held in the parking lot of our church - St Andrew's - we have a small pile going from a couple of people so hopefully it'll be a decent sell. We may also be selling bake goods and such. If you have things to donate we'll come get them or if you're looking for something we may just have it. 

Thank you for keeping us in your thoughts!

Thursday, July 7, 2005

Ok, so we met with the surgeon today. He is very nice, I like him a lot. Grace just smiled and laughed the whole time, which NEVER happens with her and doctors. So, I took that as a good sign. :) They are going to schedule another test next week to do more examination of whether or not she needs the nissen (the closing up part of the esaphogus) From the one they did this week it appears no, but that is just a quick snapshot. So they're going to do a longer test - 12-24 hours - and check it out - a PH Probe. I'm glad he's doing this and did not just rule out the nissen. While of course we want to do as little as we have to....the majority of SMA kiddos that have G-tubes either get the nissen with it, or shortly there after. And after placing a G-tube usually the occurance of reflux goes up. So...we're trying to avoid multiple surgeries. They are hoping to schedule the test at the beginning of next week and then hopefully the surgery at the end of next week. We'll probably be in the hospital for 2-5 days - depending on if she gets one or both.

Tuesday, July 5, 2005

Alrighty...we had an upper GI done today to check for reflux - a lot of the kiddos have issues with reflux which causes aspiration pneumonia. So, sometimes they have a nissen also where they tie off/close up part of the esophagus so they can't reflux back up into the lungs. She wouldn't drink the bottle they gave her so they had to put in a nasogastric tube - a feeding tube into the stomach through the nose. She is such a trooper!! They only saw one incident of reflux which they felt would not be cause enough to perform the nissen. We have an appointment on Thursday with the surgeon to discuss everything and then we will know exactly what will happen. We also got some powder thickener to add to her bottles so they are a thicker and not as easy to aspirate. 

Thursday, June 30, 2005

Wellp....we had her swallow study today. It's really neat how they do it actually - with barium and x-rays and video tapes and all. They tried several different consistancies of liquid and then tried some more solid food. She wouldn't eat the more solid stuff - course it had that nasty barium paste on it, so I don't blame her. Anyways...she has good oral function and stuff, and she's swallowing like she's supposed to, but...her muscles are weak and she isn't swallowing everything. There's left over residue so then when/if she breathes it may go into the wrong tube. She, the speech pathologist that did the exam, said she saw several incidences where it did go into the wrong area. More so with the thinner liquids than the thicker ones. So, it's time to get Grace's G-tube - her feeding tube. We don't know any of the details yet...have called the pediatrician and am waiting to hear back. It will be a surgery...a tube in the stomach which she'll be fed thru. After that is in place she can eat a few bites of pudding like substance at each meal just for pleasure/taste. But no more than that and her source of nutrition will be thru the tube. Not sure when all this will happen but we are guessing within the next week or so. Dr. I told us to go ahead and come home and have it done in Austin. So, at least we'll be in town. 

Sunday, May 29, 2005

Well, we made it back from our trip to Seattle.  We had a great time!! Since we went with mom and dad there were record highs up there. That seems to happen when they travel.  In the past 2 years they have gone to Italy, Minnesota, and Taos - all times planning for cool weather and all times having heat waves.  But, it made for beautiful weather and a great time! Be sure to check out all the pictures from our trip! 

Monday, May 23, 2005

Alrighty....We went to the pulmonologist last week. He is very pleased with Grace and said she looks and sounds great. I'm not thrilled with the settings he has on the BiPap, but I'm giving it a rest for a little bit.  She's doing fine, so...we'll let it be for now. He'll see us again in 2 months and then we'll work on getting into the sleep lab and doing a real sleep study. He said it takes about a month to get into the sleep lab. Then they'll monitor her all night and be able to measure O2 and CO2 and change her settings around....so...He also did some blood work on her this visit - to look for other signs from the BiPap to make sure he isn't over/under ventilated. Everything came back normal!

Friday she had her regular PT appointment. Her therapist is very pleased with her. VERY! She wants her to start having therapy 2xs a week b/c she is doing so well and it does seem to be helping. I agree and have been wanting to do twice a week also. I work with her at home, but not the same intensity she gets at therapy, or as knowledgeable as Dianna. Plus it'd be with a different therapist so it'd be good to have another perspective and all.  That'll start a new battle with insurance as they only cover 60 visits a year, so...we have to look into it. The co pay is already almost $30 a visit, so if insurance doesn't cover it. I dunno....but it also says you can see about getting more covered, so we'll be looking into that.

We got our second denial for the stander. We're not done!  The first appeal we just sent in a letter of medical necessity. I had more information, but was advised to just send the LMN so then I'd have more to send if it was denied again. They said sometimes insurance just automatically denies the first time. So, now I'll gather the other papers and send those in. In light of this we have already began talking about her power chair. They usually like the kids to get these sometime between 18-24 months - when kids are really starting to move and explore their independence, so...it's only right. It's very important developmentally that she have the opportunity too. So, we've already started talking about it with our PT and we're supposed to see a couple of chairs next month so we can figure out what will work best, so we can start the approval process with insurance, so if we fight it for months like the stander...we'll still get it by the time she's 2. HOW EXCITING!!!! Can't you just see her driving around? She'll be so cute. I think I'm more concerned about Keven - wanting to juice it up and race it around...

We went to Scottish Rite on Monday. That was the last day of taking the drug for the drug trial she was on. So, we had just a regular 6 month check up with the neuro up there. They're pleased with her - she looks great. Then we did the study check up - the usual Physical therapy exam, MUNE test and blood draw. The PT was very impressed and pleased with her. She seems to be getting stronger, which "shouldn't happen" but I told them they picked the wrong gal to mess with. :) YEAH!!!  MUNE test was ok - she was so tired by then she fell asleep. Blood draw went excellently. Of course she cried, but they were able to get the vein on the first try. YEAH!!! They did some adjustments on her wheelchair so she fits better with her TLSO on and b/c she's already gotten taller. Not sure of her length, but she weiged in at 22 lbs today.  Course since it's all limp weight it feels like 50.  Now we stay off the drug and go back in 3 months to do a follow up of tests to check for changes off the drug. After that if our home Dr will prescribe it we can put her back on it. That is our current plan. Her pediatrician seemed very please with her and thought she should stay on it. So, once we're cleared from the study hopefully she'll prescribe it for her and we can start it up again. We don't know for sure if it has helped, but it hasn't hurt. And she's doing so well with all we're doing, we don't want to not do it...

We'll be back up in Dallas at the end of June so they can do a video swallow - to check to make sure she's swallowing fine. Now, based on how she eats and what she weighs - she's doing just fine.  But, it's good to check and make sure she's not aspirating at all. So...we'll see... 

On a different note....If anyone knows or has any ideas for fundraising, please let me know. We are trying to think of ways to help raise money for Grace - first and foremost for a handicap van. Our Tribute works ok right now - although it is a pain for me, literally, to lift her chair in and out of it. But, once we get the power chair - that will not be an option, as they weigh way too much. And it would be better for her to be in her chair in the car as it has the best support for her. So...we are not looking to get anything new or fancy (as that would be at least $30,000) - just to serve the purpose.  After that would just be to raise funds to help pay co pays and medical equipment, etc...So, any ideas would be great! We'll probably have a garage sale towards the end of summer....that's about all we have right now. :) So any suggestions would be great.

We leave Wednesday for a trip up to Seattle. We can't wait!!! We get to go see some family we haven't seen in years and they have not met Grace. We can't wait.  Can't wait for cooler weather too!!!

Tuesday, May 10, 2005

Grace had a pulmonology checkup today. She is doing wonderfully! He is very pleased with her and how well she is doing. We'll go back in 2 months. Now, even more exciting...she figured out how to drink through a straw. Well, she's figured out how to suck it up the straw...now to get the swallowing down too - right now it just kind of dribbles out her mouth. But it's amazing!!! Just like her!!! 

We go to Scottish Rite in 2 weeks and then off to Seattle. We can't wait!!!!

Monday, April 18, 2005

Ok, we are finally home. We got home Saturday afternoon - after 3 PM. It was a long week in the hospital, but am thankful that Grace was/is healthy and she did amazingly!!! She of course charmed everyone and just kept saying "Hi" over and over. She's too cute! But we're home and we have her set up, in her new big girl room, on the BiPap at night and the pulse-ox, to keep an eye on her heart rate and O2 level. She never stops amazing us!

Thursday, April 7, 2005

First, we've made a lot of progress in the last 2 weeks. We have received Grace's TLSO (Thoraco-Lumbo-Sacral Orthosis, or more simply thoratic lumbar support orthotic), we call her turtle shell. And her KAFOs (knee ankle foot orthotic) leg braces (last night) The turtle shell seems a little big, so we'll get it adjusted and the leg braces won't do us much good until we get the stander. Which we have gotten the letter of medical necessity from the DR to send in for the appeal, so yeah for that too.  We also have the mask and the bonnet for the mask, in our possession, at our house. :) They are supposed to bring us the actual BiPap machine on Monday. And then we are scheduled to check back into the hospital on Tuesday. What a concept - to have all the equipment first. Wouldn't that have saved a lot of time and money in the first place? Sorry...getting off tangent. So, we'll be going back to Austin Children's hospital on Tuesday for a few nights.

Friday, March 25, 2005

Wellp...we're home. We'll probably be back there next week again, but we're home for now and get to celebrate Easter at home. They didn't have everything as "in line" as they thought and didn't have the mask. It was supposed to be overnighted and get it today (Friday) Now, they're saying Monday. They gave us the option of staying and trying some other things - YEAH RIGHT - or waiting for the mask to come in and then getting everything together and making sure it fits and works and then going back. Yeah, I took the second choice. Grace charmed everyone though and was wonderful.

 She has 4 teeth now with another one starting to poke through. Can shake her head no like nobody's business. Sometimes she means it too. :) She's working on yes and it's so cute b/c she moves her eyebrows up and down when she does that one. She gets measured next week for her braces. YEAH!!! They got approved by insurance. Of course the point of them is to use them in the stander that they denied....whatever dude!! We'll get it all together eventually. Hope everyone has a wonderful Easter. I know we will!

Wednesday, March 23, 2005

Well, today was not a very exciting nor productive day.  The Dr/hospital was expecting the DME (durable medical equipment) to bring masks to try – that was the point of coming in early in the day. The DME got here and didn’t know that and assumed a children’s hospital would have some. Plus neither of them keep them in stock b/c they’ve never done it. So, they don’t even know what they want or need. I’d be even madder if they weren’t so willing to listen and do what they can. So…didn’t really accomplish anything today. They are gonna attempt to do a nasal prong thing tonight and push some oxygen thru just to see how she takes getting pressure and such. But, they probably won’t get a mask here until Friday. Then time to get use to it. So, we’ll probably be her until at least Sat or Sun. She’s doing great though and charming everyone, as usual! 

Tuesday, March 22, 2005

She also had her television debut this week. Sunday we went down to do a spot on KXAN for the firefighters Fill the Boot campaign and MDA. We did a live thing at 8 AM and then they taped us a played it at 5. She's gone from print to small screen. Big screen here we come... Just kidding.

Thursday, March 3, 2005

I must say that Grace is amazing. She was poked, prodded and messed with to all ends and when we got in the car Tuesday to come home she was laughing.  She was soon asleep, but was still smiling when it was all over. She's incredible!!!!

Let's see...Monday we checked in at Children's in Dallas at 6:45 AM and checked out about 9:15 PM. They did a blood draw before she had her medicine and then did 5 more after her medicine at different intervals. They did all the blood with the heel clip things, so her heels are all beat up and feet are sore. They also took 4 urine samples. Luckily they didn't cath her - they bagged her, but that didn't look like much fun either, all the sticky stuff and having to constantly change it. No fun!!! Poor little girl. They were doing blood and urine samples as part of the study she is in. They are seeing how her body metabolizes and uses the medicine. Well, then the nurse messed stuff up.   We're used to giving her the medicine with breakfast and dinner.  So, at dinner I went to ask her about her medicine. She had to give it to her that morning - since we're at the hospital and all. So, she came in to do it and Keven being the smart guy he is said he didn't think she was supposed to have it since they were checking to see how her body did with the medicine and they were checking at different intervals from her first dosage.  This made sense and I didn't know because she hadn't said so I went to look for the Doctor.  The nurse said not to worry about it she would have said something if she didn't want her to have it.  Keven and I didn't like that and kept looking for her.  The nurse didn't care and went ahead and gave it to her and said oh well - blame me.  Then her shift ended and she left. The Dr. was not happy.  She had marked her chart, which the nurse didn't even look at, and had her pager number on the chart in case they needed her.  So, the data is skewed and the Dr. was not all too pleased with the nurse.  But, they're just going to make note of it and mark it - we're not doing it again. Thank goodness!!! We bought her a Beanie Bopper doll in the gift shop b/c it's her. It's an angel with blonde hair, blue eyes and big round cheeks. She's so cute, but not as cute as Grace. 

Tuesday we checked in at Scottish Rite at 7:15AM.  Dr. I looked her over, did weight, vitals, etc...Then they had to do a blood draw. Poor little girl.  They did her arm, but got it the first time this time. THANK GOODNESS!!!  They gave her a beanie baby - lamb, for being good.  By 9 she was exhausted and  then we had to go do the Physical Therapy evaluation.  She cried through the whole thing. She usually fusses some because they're working with her to see what she can do physically. So, they push her beyond her abilities. So, it's always hard and tiring, but today...just horrible. She cried the whole time and just kept looking at us like make them stop. It broke our hearts. We finally got out of there and she took about a 30 minute nap. While she was napping Ms Dallas County came and sang for everyone and Santa passed out toys to the kiddos - she got a stuffed Santa doll. Then we went to take pictures. One of the OT ladies is doing a presentation in February and wanted to use Grace as an example in her slide show. Who can blame her? They took a picture of her in her regular stroller and then one in her kid kart. Showing the difference in support and seating. They're hoping to get her wheelchair in and get a picture of her in that too. Then another break time...

Then to our "Family Conference" with all the doctors. The chance to ask our questions. They got the gene count back and she is indeed SMA Type I. That wasn't what we wanted to hear.  But they said just because the odds are against her....The mortality rate by age 2 isn't as high as once was. But it is still about 80% pass by age 2. She is doing really well though, even the Dr. said she's doing great, and so we are hopeful. The study she's in is hopefully at least slowing down the progression of the disease. They're still searching for that cure!!  They are also great because they talk about years down the road...don't just dismiss her. We met the support people there, that can be of support in Dallas and meet us up with someone in Austin.  Dr. I is a big supporter of NIV (Non invasive ventilation)  The BiPap and such - what the pulm. had been a little against. But, said there is no need for it right now. She's doing great, so not to worry about it yet. Yes, they want to be proactive and catch stuff ASAP, but they haven't seen supporting evidence in using it so young if they're doing fine. But, when it's time for that they know all about it and have lots of experience and are there and ready to do it. Same with the G-tube (Feeding tube) She doesn't need it yet, just keep an eye on her, and when it's time - it'll be done no problem. Both things are more of a when will she need it - not if she will need it. What we can do is keep her healthy - especially respiratory wise - out of smoke, away from germs and sick people, check for allergies (which we need to look into b/c I'm pretty sure she has allergies - her nose is always congested, but her chest is clear. That's good that the chest is clear, but...she'd probably like her nose clear too) And for her a simple cold can quickly turn very bad. Respiratory is the biggest concern right now b/c they aren't that strong, so they can't fight it off like healthy people. She also recommends a power wheelchair about age 2. It's great for them because they get to learn more independence and because they can learn so much and so well at that age. I think Keven's more excited about it than her. : )  Also, we have to make sure we watch her positioning - when sitting and laying and such - to watch for scoliosis. Most of the kiddos at some point develop it and have spine fusions or something like that. So, just try and keep her as straight as possible and keep an eye on her back. They do also know people, in the area, that have done the pre-genetic diagnosing, with IVF and it was successful. So, we hope to be looking into that so Grace can be the big sister she's meant to be. Everyone is so nice and accessible and great.  

After the meeting we had to wait and talk to the nurse heading the research study so mom and Grace wandered off. They found a party going on down the hall - The princess and nutcracker from the Nutcracker ballet in Dallas had come down. So they put face paint on Grace and took a picture with her.  And a lady from The Dallas Morning News took her picture and info, so she might be in the paper tomorrow.  Then we went and filled out paper work for our handicap parking sticker and finally left about 3 PM. She slept almost the whole way home. Who can blame her!!  It was a long 2 days, but we made it!! 

Grace was great!! She just has the most beautiful and loving spirit and everyone can feel it!  Santa visited her early on Friday the 17th and she got her present. A puppy dog.  Her and Hope. We have lots of hope for Grace and progress, so we named her puppy Hope Noel. She's still not too sure of her, but seems to like her ok.  Thank you for continuing to keep us in your hearts and prayers. We keep all of you close to our hearts too! Hope you have a wonderful holiday!! We will - it's Grace's first!! We're so excited!!!