Saturday, October 21, 2006

Oct 20 update - the boss of me

We had a pretty great two weeks... One of these pics is from Mommy's birthday, and we were just hanging out together. The other picture our little man looks like he is ready for business, and like he is the big boss:-) Isn't he precious?

We discovered why not many people in the south had jack-o-lanterns... the humidity in the air spoils them FAST!! I have attached pics of the pumpkins we made two weeks ago - they had to be tossed this week, as they were a big moldy mess. Oh well - next year we will get fake ones:-)

The boys were very generous with mommy, and I had a great birthday with my student staff too who showered me with affection and gifts and food:-) Thanks to my family and friends who sent cards and gifts as well. I got a parallel bible I had been wanting, and I can't wait to use it for my study this week!

Braden's seizures are holding steady at about 20 or less a day, but he did have another extended episode that was a seizure of another kind. So this week we will discuss with our local nuero about the next step... ketogenic diet, botox, new meds, stopping some meds, etc.

Our hand braces are not in yet, so we don't have any pics to share there. The good news is that he is still making some GREAT progress with his head control, he is using his abdominal muscles more, and the sitter said he almost rolled all the way over until his own arm got in the way. He has been making progress on the rolling, and he has been able to do that for some time, it is his arm strength and usage we still need work on. Since our stay at TX Children's Hospital, he hasn't played with his hands much like he did before... so we will keep working on progress. He is also dropping his shoulders a little more too - not relying so much on his shoulders to support his head, so that is great news too.

We have only had a few scary moments with Braden lately, but mommy and daddy are learning to handle the situations as they come along. God has blessed us with strength and courage and the wisdom to handle everything that comes our way, SO FAR. Thanks for keeping us lifted in your prayers, we could not do this without all of you supporting us.

Wednesday, October 11, 2006

A quick trip to the ER and more results from this week

The past two weeks had been without incident, until Braden starting missing the "white coats" again. He was more congested and 'juicy' than normal, so Brad and I decided to take him to the clinic this past Saturday to have him checked out. We wanted to be sure he did not have another pnuemonia, as we had a couple fever spikes and accelerated and deep breathing episodes starting early Friday morning at about 3:30 am, and again at 5:30 pm.

At the clinic, we saw the doctor on call, and nurses who have not dealt with us yet, or seen us in person yet (although they have all been briefed by our doctor many times about our "anomoly" situation). The doctor seemed concerned about possible pnuemonia as well, and the nurse was VERY nervous about his breathing habits (however, I must tell you that he was NOT in any kind of bad shape like before when we took him in, resulting in a hospital stay). The doc decided it was best to send us over to the hospital, and tried to get us directly admitted into the PICU, however the admitting doctor (one of our specialists, the pulminologist), was busy with a critical patient and had us get checked out in the ER first. The nurses said they couldn't believe how calm we were, and that we would be comfortable enough with the situation to drive the 8 blocks to get to the hospital, as opposed to calling an ambulance. Yes, WE had to calm down the doctors and nurses at the clinic.

So while our intentions were to avoid going to the hospital ER, that was not in the cards for us. Luckily teh doc we saw there, admitted us last time, so he was familiar with our case (which always helps - A LOT in our case!). He did chest X-rays and did blood gases and chemistries. While we waited, Daddy fed the baby, and of course - he calmed down and showed numbers better than he had in an entire three day period!! It was then that they decided to get us admitted to the floor, instead of the PICU. Brad and I have discussed that at this point, we are just no longer "floor" people. Not meant in any kind of 'elitist' way, just that it's harder to get what we need when we need it on the floor without 1 on 1 or 1 on 2 nursing, like the PICU provides and we have at home. We have everything we need at home, and it's more of an inconvenience to be on the floor where we can't access everything like we can at home or in the PICU in a timely fashion.

So we called the ER doc in and conferred with him about our results. While our chest X-ray showed no pnuemonia, we wanted to know the other results, as the last time our chest X-ray just showed bronchiolitis, it was actually pnuemonia. So we inquired about our white blood cell count, and it confirmed that he was not under any extra stress or fighting infection, as it came back at 11,000 - within our normal range. After discussing our wish to be sent home, the ER doc, our specialist, and the nurses felt comfortable sending us home since we were most comfortable with that decision, and they are aware of our experience with the baby so far, and know that if anything were to change we would come back. So for the first time in some of our nurse's careers (as they shared with us), an ER admit to the PICU was actually sent HOME! We got to go home, and Braden has been fine since!

Tuesday we have a salivagram done to see where Braden's secretions are going. We needed to know if they are going into the lungs or into the esophagus, and eventually into the stomach. We are having this test done to see if we are a good candidate for BOTOX, where they would paralyze two of his salivary glands to help him improve upon his oral motor skills, learn to handle his own secretions again post-seizure activity, and hopefully help keep him from future pnuemonias. The salivagram confirmed that part of Braden's secretions are going into the lungs, but that part of it is also making it to the stomach. So all this tell us NOW, is that we ARE a candidate for botox, and we will have to get that scheduled. The questions we still don't have answered, are: Is this happening due to some physical malformation? Is this happening because his muscles in that area are not developed enough? Is this something he can grow out of, or work on to get better? Is there a surgery to fix a physical deformity if there is one? And lastly, or is this just a nuerological issue? Those are questions we will need answered, before we ever start considering a tracheostomy for Braden. God has yet to put it on my heart that the trach is the path for Braden, like he has done for everything else that has come our way. So I will continue to pray for guidance in regards to this issue, and hope that God will lead us to the right path for our son.

We did get some good news in physical therapy this week. Braden is holding his head up off his chest enough when we try to sit him up, that we are starting to work with him there... kind of speeding up our therapy a little bit, as he would normally be scheduled to keep working on rolling. He was able to show our therapist that he is starting to roll on his own, and she was happy to see that progress - so are we! THANK YOU GOD FOR YOUR SMALL BLESSINGS WHEN WE NEED A SIGN THAT YOU ARE LISTENING TO OUR PRAYERS. We and the sitter continue to work with Braden towards improvement in this area - it's working!!

We (and by that I mean, ME) carved pumpkins this last weekend while Braden napped and Daddy cut the yard. We tried doing some fun photos with the little guy, but as you can see, he just wasn't "into it" much at all, and still interested in napping. Oh well. We finished the weekend with a cook-out, and mommy introducing Braden to his future Power Wheels toys - he seemed to enjoy them.

Have a great week everyone, and thanks for checking in on us! We will update you next week, as our hand braces should be here, and we should know if we will be checking into TCH (Texas Children's Hospital) for an extended stay to get Braden on the ketogenic diet or not, based on conversations with our local nuero. Pray that God will lead us down the right path for our little man - thank you!

The Wilson's

Thursday, October 05, 2006

Oct 4, 06 update

We kind of had our first "regular", dare I say boring for us? week. We worked all the days we were supposed to, the sitter came every day she was supposed to, and we didn't have to go to the hospital. We went to therapy this week, had home nursing come, and seen our pulmanologist. Our visit with the pulminologist went well, as we got to address that Braden is still not handling his secretions well. Dr Thomas suggests we do a saliva study (similar to a swallow study) to see where they are going... are they going down the esophagus or ending up in the lungs? If we are seeing any end up in the lungs, then we will move ahead on having botox (no fair). They will inject two of Braden's salivary glands, which essentially paralyzes them for about 3 months, and has no side affects like the medication we are on. If we decide to do this, we will do it when we are hospitalized to start the ketogenic diet.

Depending on how we do on Kepra, the nuero will want us to arrange for a stay in Houston, so Braden can start the ketogenic diet, and we can have the other procedure done while we are there. His seizures are slowly decreasing from 100 a day (still better than the 200 a day we had early on!!)... down to less than 50 or 60 a day now. Since we were having less than 10 a day on topimax, we are hoping our new "potion" of meds will get us to that same level.

Braden is slowly working back up to his physical development, where we were before the extended hospital stay - we are almost there. He is really good at tracking faces, but he still can't hold his head midline on his own, he can't hold it up for extended periods, and he still has not started smiling again since the seizures came on. We were fitted for little hand braces to wear a few hours a day, to help him open up his hands more, and help him not use his stress-response of turning his hands and arms inward when he is upset.

On a good note - he is more relaxed overall now and sleeps with his hands open most days. Our boy is ALMOST 16 pounds, and just blew through his 3 - 6 month stuff without even getting to wear some of it. He is also now 24 inches long. BIG BOY.

We will post an update when we know if we will be sent to Houston to check in, or if we will just be going for a check-up. Thanks for checking in on us,
Kodi, Brad, and Braden