Saturday, July 29, 2006
We got the photo collage we ordered back, these were taken at about 2 months. It is called a "precious parts" collage, and we just LOVE it!
We are finally starting to see some reduction in Braden's seizure activity, so hopefully this means that the ACTH injections are working. All of your prayers are appreciated, and hopefully this means that they are all being answered! We anxiously await the day the seizures stop altogether.
We have switched therapists to a lady who has been doing it for 14 years, and has a similar case to ours. The mom even agreed to talk to me, I will be calling her soon.
I have been busily interviewing sitters for Braden, and I think we will have it all figured out next week. We have had some good ones, we will share more about the final picks once the selections have been made. Again, thanks for the prayers, as we need this one answered. Braden went to work this week with me, and had many admirers and visitors. They want me to bring him all the time:-)
We get a new g-tube put in on Monday, as we have grown too big for ours. The steroids are making us gain weight, as mommy & daddy are finding new rolls every day:-) We will be sure to post pictures as we get more chins:-)) Thanks for checking in on us, write us a note for Braden's scrapbook if you get a chance!
Kodi, Brad, & Braden Mark
Monday, July 24, 2006
This morning we saw the surgeon about the extra granulation tissue around our mickey button. He said it looked pretty good, but since it was oozing more than normal lately, he agreed to cauterize the wound with silver nitrate, and we will be following up with steroid cream for any future granulation tissue that may grow. First, they removed his button, and spread on some anethetic cream to numb the area. Then he wipes that off, and takes these long, match-like sticks and rubs it on the moist tissue, and it turns it a grey color, and eventually it will shrivel up. Since the tube was out over 20 minutes, the doc tried 3 or 4 times to get it back in to no avail, so he had to use a temporary tubing and kind of "stirred it around" to make his hole a little bigger, and then he got the original button back in. Doc says part of the reason we have overgrowth, is he is getting bigger and needs a longer button - it is too close to the skin. So we ordered a new one, and will have to get that one put it once it arrives. The doctor also confirmed that those ER docs who put air in his mickey screwed up, and they were supposed to use water like we said!! You can bet I will be contacting hospital administration about getting those charges for the second ER visit taken off our bill!
Then the home health nurse helped me give my first injection to Baby B today... I was pretty nervous, but she said I did fine. We will see how it goes tomorrow, I hope I do OK. Shala had her first treatment today, and says she feels pretty good - but is really tired.
Braden was introduced to most of mommy's co-workers and employees today - he had many admirers;-) I know some of my students are anxious to hold him! We will be sure to log any more updates, we may have more to share after our bloodwork is taken tomorrow and we have OT/PT wednesday. Thanks for checking up on us!!
Kodi, Brad, & Braden
Sunday, July 23, 2006
Today is the third day we have been on our ACTH, and it has already given us some side effects. It seems to have given us some irritability back in our personality, more so around our digestive issues again, and we are pretty tired and don't want to be disturbed if we are sleeping.
Daddy gave us our shots yesterday and today, getting over his fear of needles pretty quickly. Mommy is pretty nervous about giving the shots, I guess it is about not wanting to see your baby in pain.
This week Braden is coming to work with mommy as Susanna is off to see her mom in TX. We will miss her! We see the surgeon tomorrow about our overgrowth around our G-tube, it is 'gucky', so we hope to get that cleaned up and taken care of.
We are still having seizures, but not nearly as many, and not always full ones, and more time is passing before we have more episodes. Please continue to keep my entire family in your prayers, as Aunt Shala was just diagnosed with breast cancer at age 28, and starts radiation therapy this week. We have all had a rough week, and we need your prayers as we face many difficult life scenarios right now. Shala's prognosis is good, as they caught a usually fatal kind of cancer with a 12 - 18 month life expectancy at the very front end, so her chances are looking good for radiation therapy to work.
Thank you for blessing us with your support, love, and prayers.
The Wilson family
Friday, July 21, 2006
I wanted to share some sweet photos... Braden started tracking objects, so we immediately went out to buy a little activity gym to stimulate his interests, and it seems he prefers it more for napping - isn't that just the way it goes? Braden loves napping with Mommy & Daddy in the rare occasions we get to snooze with him - this one is sweet, Brad actually fell asleep with his feet on the bassinet with his legs off the bed, hanging with Baby B in the bed before putting him in the bassinet.
This week brings disturbing news, Braden started having seizures. At first we weren't sure, so we started recording them on video, and all his doctors confirmed that they are indeed infantile spasms or seizures. They sent us to get another EEG, and it confirmed that he is having seizure episodes during sleep and awake. These are generalized seizures, the kind that can cause further brain damage. Our nuerologist decided it would be best for us to take a very aggressive approach to attempt to stop the seizures. Today mommy & daddy will be trained to give Braden daily injections in his leg. He will be getting a steriod they call ACTH. He will be gaining a lot of weight while on the steroid, could become irritable (again), could get a rash or acne, could get bronzing of the skin, and we have to monitor his blood pressure, temperature, and glucose levels. They tell us this approach should stop the seizures within about 7 days, in a normal scenario, but will stay on the steroid one month from his last episode. Then for six months after the injections are done, he will be able to resume immunizations. Because the steroids will break down his immune system, he will have to be cared for at home, and not a daycare.
After 2 1/2 weeks of training the lady who was supposed to take him, the day before I returned to work, she decided she just was not comfortable taking care of him. Luckily, my friend Susanna offered to take him until the end of August, and after 3 feedings she was off to the races. She has been such a blessing, as she was with me the day we were going from doctor to doctor trying to figure out what was going on with Braden. I truly have leaned on her, and she was there to cry with me when the doctors gave us a prognosis. So, what does this mean for us now?
The doc says Braden will probably eventually develop another kind of seizure once these have subsided, so we are looking at a lifetime of medication to keep them under control. She also said that possible (not probable) outcomes down the road are a Cerebral Palsy diagnosis, mental retardation, and he may never learn to walk. Obviously we are devestated, but trying to keep things in perspective... we will still be praying for a miracle, and counting our blessings that this situation does not usually have a fatal outcome.
Please continue to keep us in your prayers during this difficult time, as we will try our best to remain positive and keep on the side of hope. Thanks to everyone who continues to keep us lifted in prayer, we could not make it through all this without you.
Kodi, Brad, & Baby B
Thursday, July 13, 2006
Well this week did not give us any more answers, however, we feel we are closer to understanding what the future could hold for us. Our blood panels came back negative for everything, and the nuerologist feels we have exhausted the possibility of anything metabolic, so we will not be going down that road any longer. She was able to provide us with a little more information about our specific brain damage... that it is the basal ganglia that is damaged. Knowing this will still not give us any diagnosis as of yet, but the 'abnormalities' we see with Braden include a 'dancing' relfex of the feet, the tightness and incredible strength of his pectoral muscles as he turns his wrists inward when upset, the overextension of the neck towards the butt when upset, and that he is still not lifiting his head when leading with the arms (unless he is upset & tense). We know that all these things are not normal, and the nuerologist wants to see us back when Braden is 5 months old to re-evaluate his situation, to see if we have made further progress. We, as parents, appreciate that she never tries to give us false hope about his future, but continues to give us a real picture that things are not normal, and may never be. This does not mean we should not remain positive and hopeful that he can continue to make progress as some issues have subsided, and there are many things that keep us on the side of hope... the stronger swallow reflex, the loss of jumpiness in response to patting, the further relaxation of extremities, and the fact that he is now able to track faces and objects with his eyes.
The pediatrician visit told us that he is now 11 lbs 9 oz and 23 1/4 inches long. While we had much concern just a few weeks ago about his ability to gain weight and gain growth in head circumference, we are now more hopeful that the new feeding plan is helping to 'catch him up'. He did catch a little cold, and is trying to cough - we were checked for bronchitis to be safe, doc says we are fine.
After our visit with the doctors, I started researching what exactly damage to the basal ganglia could mean... and if you do research, you will find information on fetal alcohol syndrome, Huntington's disease, Parkinson's disease, and cerebral palsy. Everything I have read leads me to believe that we will have an eventual diagnosis of cerebral palsy. Please know that NO doctor has even uttered such words... we have discusses all such symptoms of CP, but nobody is ready to make any diagnosis. When I discussed my questions about his progress with his physical therapist... she says she was not ready to make a diagnosis yet, but seemed to concur that it could possibly be CP. CP is an umbrella term that ranges greatly from mild to severe... and if his current situation is any indication, we will be on the mild side. Here is a link I found about a similar situation if you wish to check it out: www.bio.net/bionet/mm/neur-sci/1998-November/034920.html or you can try http://www.bio.net/bionet/mm/neur-sci/1998-November/034920.html if the first one does not work - it is the same thing.
We continue to pray for his growth and development. I am busy training the daycare lady - Braden will be one of five or one of six, as one is a part-timer. He is the youngest, there is a one-year old, and three two-year olds. He will be kept separate from them most of the time, unless under direct supervision to keep him safe. We hope to have her confident about feeding him by next Monday... we are going twice a day for a feeding to get her comfortable, and I will be returning to work next Tuesday. I will still take Braden to therapy once a week, and once my flex-time has been used, Brad & I will trade off on taking him. The home health nurse has agreed to do the rest of her visits to Braden at his caregivers home, which is an extra feeling of reasurrance.
Thank you to everyone who keeps checking in on him and sharing your comments and well-wishes, we certainly appreciate it. It means a lot to us that so many people care about him, and it helps keep us going knowing that so many of you are praying for all of us. God has truly blessed us, and we are so thankful that He has surrounded us with so many caring and loving people. We wish we could do more than just share our thanks... you are all also in our hearts and prayers.
Kodi, Brad, & Braden
Monday, July 10, 2006
This past week brought some positive news from our therapist. We are getting more flexibility and our stretches at home are making a big difference! We are getting a stronger sucking reflex, so the therapist wants to try a swallow study in August, which could mean our feeding tube could come out sooner:-) Braden is gaining weight, he is now 11 lbs 4 oz and I think he is 'fattening' up to be a chunky baby. I caught one of his first smiles on camera, so I thought I would share. He is starting to enjoy his own reflection, and his hair seems to be turning more strawberry blonde every day!! Gram Betshchart and Great Grandpa Wilson have passed on more genes than perhaps any of us anticipated. He is more satisfied on our new feeding schedule and continues to be more pleasant throughout the day. He used to get a little jumpy when being 'patted', and that seems to have subsided now too!!
So we continue to have hope that he will continue to thrive and regenerate any damage suffered but only time will tell. We are off to the nuerologist tomorrow and will get the results of the extended panel - so please keep your prayers strong for us. We will make a new post when we have news to share from that appointment. This week we head to "train" the lady who will be taking care of Braden... she lives on the way to work, around the corner from ur subdivision, and if you can believe it, has a daughter that lives in Derby! Small world... we will share more with everyone soon - thanks for your continued support!
Braden, Kodi, and Brad
Monday, July 03, 2006
Nana Debby and Grandpa Richard came down to spend a week with us, and what a week it was. They were initiated into the special needs feeding support team, and passed with flying colors, allowing Mommy to work for three half days. Nana Debby got to go to the doctor and the physical therapist with us, for a first-hand view of what our week is usually like. Grandpa Richard was busy helping us get our new house up to snuff, playing handy-man and helping Brad on some home improvements. Having "live-in babysitters" allowed Mommy a late sleep-in when Braden was up most of the night one evening, and allowing her to do some home improvements too. The week just flew by too fast, and it was over before we knew it... it was nice to celebrate our anniversary with them, as they were nice enough to order-in our usual anniversary meal from Outback.
On our actual anniversary date, we took our first family social outing to Amy & Trae's for some dominos and dinner, and enjoying visiting with Susanna & Greg. See how cute our little man is?? We hope to have more updates on that panel this week - we never heard anything last week, so please continue to keep us in your prayers.
Kodi, Brad, & Braden