Reed is not feeling very good and could use some prayer
Well tested positive for the flu. Doing a little better today hopefully tomorrow will be better yet. Thank you all for the prayers.
Please pray hard, we are being transferred from Allen to Iowa City because of the flu and complications that could lead to issues with vanishing white matter. He is very weak we need full strength prayers friends.
Reed is doing a little better, he has developed a little bit of a moist cough. Woke up a little last night to take some meds and shock his head yes to wanting to listen to some books. He woke up at 3 and we changed his diaper and his eye popped open wide a few times it was nice to see them. He made some very definitive head shakes for a few things. He just had his fourth feeding we changed him again and he drank some water out of his bottle he seems a little bit more responsive this morning. He is such a tough guy took the feeding tube like a champ with no protest, he has been stuck several times for blood draws, had an IV put in, two flu tests, a strep test, two chest X-rays, potty samples were taken twice and hasn't made a peep at all!! He is in room 86 in the pediatric department and we have no plan of when we will be discharged.
Yesterday someone was a lot more coherent and slowly getting some energy back. His chest X-rays came back clear but his fever seems to come and go but it's staying low grade. He was able to hold his bottle on his own some yesterday and was able to eat a cup of applesauce throughout the day. When they checked his weight this morning he has gained back a little weight and best of all he POOPED last night for the first time in six days, and he wanted to get up out of bed and do it in the potty!! We were told this morning that the more we can get him eating on his own the sooner we can go home.
Yesterday was a pretty good day, awake pretty much all day and got some more bites down. We were moved to a new room we are now on the 3rd floor room 88. The night was good he got up once to go potty on the potty, but woke up this morning with a fever of 100.7 and it took some time to get it down. He did try to eat some oatmeal and applesauce this morning but one took about 10 bites then drank some juice and drank to much and it came back up. He is resting now and we are waiting on doctors to see what the next plan is.
And we finally got a smile, I may or may not have danced for it!!! Yesterday he maintained a mild fever all day but managed it with Tylenol. The doctors agreed to allow him to try drinking his pedisure through a bottle first before putting it into his ngtube. That went pretty good and he got about 4 of the 8 oz down during each of the feedings. The rest of the day was spent cuddling and relaxing. This morning more good news they agreed to pull his ng tube and see how he does without it. That brought on more smiles and some giggles. Still, not a lot of words said and when he does it's a whisper. We consulted with the nutritionist this morning and also met with PT as Reed right now has lost a lot of strength and is struggling to hold his head up now. It will be a waiting game to see if the speech and trunk and neck strength come back or if they could be effects of the VWM.
And we have been discharged...Thank you all for all your encouraging words and prayers. Reed will continue to need then as we figure out his new base line, as he is still struggling to hold his head up has weakness in his arms and continues to struggle with getting his speech again
It has been a while since we updated on how Reed is doing since his stay at the hospital. When we came home from the hospital Reed was almost like a rag doll, struggled to keep his head up, couldn't sit on his own and had lost a lot of speech. You could almost see his brain working overtime and also trying to repair itself. We are happy to say that the strength in his neck as returned and his speech is pretty close to what it used to be some delays or slowness but words are there, and his ability to sit seems to get a little bit better each day he has some weakness on his right side and tends to lean that way but we hope that with strength more with time. He is no longer able to crawl he wants to and has asked a couple times help me crawl but his arms just don't seem strong enough to hold his body or his brain is no longer telling him how to move his arms and legs together. We hope this to will come back in some form also with more time. We head back to Iowa City tomorrow for a follow-up but we feel that Reed has made huge progress since the last time they saw him and it will be a good check up.
We had one very excited little boy this morning, he even slept through the night knowing he had to go to sleep if he wanted to go to school today. After more then a month away from school today Reed headed back to class and he was very excited to see his friends, he had told us more then once he missed his friends. And to top the day off his para Mrs. Bobbi was back today also!!!
Update: It has been a hard decision for us because up to this point we have been able to keep Reed off of daily meds, but over the last few weeks his legs and arms have had a lot of increased stiffness in them so we decided to start him on Baclofin which is a muscle relaxer. We have been on the fence for giving him this drug for awhile because of some of the side effects but we felt it was time. So far just after three days of giving it to him only once a day we are seeing benefits, he would have never been able to sit like the picture below before. We are still on the look out for signs of side effects but so far we feel it is having good benefits for him.
May 11 2017
Reed Update: I haven’t given a Reed update in a while, so I thought I would do that. We would probably say that Reed is 85-90% back to his baseline before the stay in Iowa City the only thing that is still not as strong as it was before is his crawling, he does more of a scoot now and won’t go too far but that is also increasing each day. He has had probably the best days at therapy and school last Wednesday and this Tuesday that we have seen yet from him. He was so willing to participate, followed direction and did his activities so well! On a sadder note, Reed did suffer a seizure for the first time on Sunday night, it was very scary and freaked us all out. The seizure last about a minute I would say but he struggled to talk afterward and was very weak, it took about an hour to get his speech back fully and just chilled on our lap the rest of the night. He, however, has bounced back from it and has been quite himself since then. After speaking with the doctor, we are just going to monitor for now but if they keep happening then he will have to have EEG done to get a better understanding of what’s going on.
