Post surgery update

Just taking a moment to update on Stehle's amazing progress! June 29 she had her V flap surgery that was every bit as hard as all VCFS moms warned me. But the good news is that recovery happens fast with her. The surgery was to hopefully help with her speech and give her some improved equipment to work with. Everything went as planned, her flap was built and is working well for her. She has never been able to say "B", "P" or "D" sounds and 5 hours out of surgery she asked for "DADDY" and it was clear as could be. We are so proud of her! Speech therapy is going well, she is now going twice a week as well as starting school next week where she will recieve additional speech services.

The confidence her improved speech has given her is profound. Stehle is much more willing to talk but is still using a lot of sign language, especially now that her little sister is signing up a storm! :-)

I have to mention that August 22-28 is VCFS/DiGeorge Syndrome Awareness Week. If you read this blog than you have been touched by VCFS, please try to sport your pink and blue and tell someone about VCFS/DiGeorge Syndrome.

Another Year

Stehle's third birthday has come and gone, it's very hard to believe! And every birthday is a milestone and a reminder of what a wonderful and strong little girl she is. But also right after her birthday is when we do a ton of check ups with all kinds of specialists. The best one by far was her cardiologist check up, Stehle doesn't have to go back and see him for another 2 years! Her ticker is doing great and for that we are thankful!

At Stehle's cleft palate check up she was given the diagnosis of velopharyngeal dysfunction/insufficiency (it seems every thing in the medical world has different names depending on who you talk to). And to fix it she will need surgery to build her a pharyngeal flap, this will help with speech and hopefully help some with her ongoing ear drainage. Surgery is currently scheduled for June 29. Earlier this month she went in for fluoroscopy, which is done by her snorting barium up her nose and then doing a sort of x-ray video. (atleast that's how it is in mommy terms) So we could then get a good look at what was causing her speech to be so nasal and "airy". And that is what we are hoping the surgery will fix.

Stehle is still doing speech therapy every week, as well as recieving speech services and occupational therapy through her school. But by far her favorite thing to do is TREAT which is a program ran by Tarleton State University that provides equine therapy. Stehle has fallen in love with a little white horse named Ladybug that she rides. If Ladybug only knew how much Stehle talks about her, which is great for her speech. And enjoys riding her which has been great for her balance and muscle strengthening.

This week we are revisiting Stehle's infectious disease specialist due to ongoing illnesses. So we are going to take another look at her immune system. We are also visiting a optometrist this week because one of her eyes is "floating", it is not following the other so we are expecting either glasses or maybe just a patch for a while.

And last Stehle is in school now and she LOVES it! She has tons of new friends, she loves her teacher and begs for school on the weekends. I'm sure she is not nearly as excited about summer break as some kids.

And as for mom and dad we are always hopeful and very proud of Stehle. Baby Hartleigh will just be glad when she out grows her carseat, she is very sick of driving to all these appointments. And big sister Landry is Stehle's hero as always.

And last I would like to encourage anyone reading this to please educate your self about DiGeorge Syndrome/Velo cardio facial Syndrome, it IS the number 2 syndrome in the world under Down Syndrome. Every 3 hours a baby is born with it, but all too often children go undiagnosed and in turn do not recieve the help they need. Maybe you have noticed a child struggling in school and has had ongoing illnesses. You could be the one to possibly help a child.

Good news

So it is time for another update I suppose!

Stehle health wise is doing great. At her last Cardiologist check up there were no changes, still watching with her aortic valve disorder. Her immune system is holding up well and her cleft repair is in tact and looking perfect.

So now we are living therapy. Stehle has speech therapy, occupational therapy, equine therapy and we are starting music therapy. The good news is that with the exception of speech she seems to enjoy all of them. Which is understandable since speech is such a challenge for her right now. She is trying so hard though, we are so proud of her progress.

In February Stehle will start the PPCD (Preschool Program for Children with Disablilities) program at the public school here. We are hoping the change in environment will promote speech also.

For now she is doing great, growing and just a joy to be around.

Changes...

I just wanted to update everyone who follows Stehle's care for a moment.
Since her cleft palate repair Stehle hasn't found much relief from ear drainage which is concerning for her long term hearing and also for her speech. Stehle already has speech delay due to being born with a cleft palate combined with muscle weakness that is just part of having DiGeorge syndrome. Since Stehle has not been able to exercise her vocal and mouth muscles through talk and babble as other babies would her muscles are weak and don't work quite right. She is starting speech therapy which is tricky because of the ear drainage. Trying to hear with fluid on your ears is the same is trying to hear under water, and if Stehle isn't able to hear right then she is not able to try and say words right.
At an attempt to find out what is causing so much drainage in her ears, her ENT did a small exploratory surgery on her ears and cleaned them out really well. Removing drainage and scar tissue and one of her tubes that she had. While she was under her ENT took samples and tested her allergies and immunities as well to see if there was anything that could be contributing to the drainage. Since the procedure her drainage has slowed and her tests came back normal for allergies and her immune system is the same as before. (Her immune system details are given in my first blog entry)
So now Stehle is making her best effort at trying to learn how to speak. We are using a new speech pathologist at Cook's Children's Hospital and I am very hopeful. The first visit was a little brutal, I didn't realize that just learning to speak could be such a big issue. We were told that before she could learn to speak she has to learn to make even noise. Stehle isn't very vocal at all and only as 2 words in her vocabulary. So we have been instructed to push her to be as noisy as possible which is funny since she's 2. Most 2 year old children have no problem with being loud.
The other kicker was being told that we can't expect to much and we should push harder with her sign language. Currently Stehle uses about 40 signs but it's still not enough to effectively communicate everything she wants and needs to. So we are learning Signed English and trying our best to give her a means to communicate. At an age that is frustrated and prone to tantrums anyway, we want to do everything we can to help her feel like she can at least communicate effectively. Stehle is starting to realize that she is not able to communicate the way we all do, her frustrations are starting to show, so we are trying our best to learn her means of communication. I started teaching her sign language when she was about 6 months old, I thought it would be fun and I heard children that use it can actually talk sooner. Never did I ever think that it would become so important for her to have and for us to learn. So we are learning more signs and we have introduced her a picture book that will help her show those that don't sign what she needs so she can point to her "snack" or "toothbrush".
And last we are coming up on school! I can't believe it. Because of Stehle's diagnosis she will start school at the age of 3 instead of 5 or 6. She will go to what is called PPCD or Preschool Program for Children with Disabilities. We are doing this to help her get a great start at education and hopefully it will set her up to be mainstreamed into regular classes once she starts kindergarten.
We have so much to look forward to but all the "what ifs" can be overwhelming for a mother. Hope this update helps everyone catch up, if not feel free to post questions and I will respond.

Doing great!

Stehle is doing so well these last few months since her last surgery it's amazing. She is packing on the pounds and staying healthy.
However we have found out through her infectious disease specialist that Stehle is not responding to her vaccines. When her blood was tested, she showed no antibodies in her system. Especially her DTAP vaccine. Which is scary for her since she already has a compromised immune system, we want to make sure she does not catch any of the illnesses that the vaccines would have helped her fight off.
We only hope that others in our community are being vaccinated and hopefully it will narrow the chances of Stehle catching something.
And of course it is flu season so we are living in a bubble a little bit. But so far it is working.
And the mother in me feels like I have to say, please stay home if your sick and wash your hands.

Stehle's Summer

Well I guess it's time for an update! It's been about a month since the Step up for Stehle benefit, which was a huge success. Thanks again to everyone for their help, hard work and donations.

Since my last post Stehle has been doing really well. She was fighting a sinus infection that she couldn't kick for about a month and half which caused a cyst to form in her throat. So after a month of switching medications and antibiotics she finally kicked it.

Then we made the big move to Glen Rose which we love! Landon was offered a position in Cleburne and then this way we get to be closer to all of Stehle's specialists. No more airplane trips for Stehle for a while, although she did enjoy them.

And last, Stehle had her cleft palate surgery Sept.2 and she did so great! Hopefully that will be the last cleft palate surgery she will have. She was released from the hospital the day after her surgery, she had no breathing problems, her ticker did great and she was drinking some juice while still in the ICU recovery. She is such a trooper. Stehle is now a week out from her cleft palate surgery and running wild. You would never think she had surgery a week ago. She still has to wear her arm restraints when she's sleeping or in her car seat, but she doesn't seem to mind them at all. She just lets us put them on with no fuss at all!

This summer has been a great one! Stehle is walking, loves playing in the sprinkler, loves animals especially puppies and looks completely healthy.

Stehle's Benefit

Some dear friends of ours are throwing a benefit in honor of Stehle. It has been named Step Up For Stehle. It is this Sun. Aug.9 from 5-10 at the Shack in the Back here in Midland. There will be two bands playing, Black Eye Shiner and Jackson Lee Brooks Band. All you can eat BBQ, tons of silent auction items, door prizes and a great crowd. $15 to get in kids 12 and under FREE! All proceeds will go towards Stehle and her medical expenses.
I feel so blessed to know so many great people that are willing to offer us this gift of relief and reassurance that Stehle will continue to recieve the best medical care. I am so looking forward to this event and I can't wait to see all our family and friends and wonderful people in our community. This is a huge blessing and another way to educate others about DiGeorge Syndrome.