"We thought we'd have to teach our son about the world. Turns out we have to teach the world about our son. They see a boy who cannot speak. We see a miracle who doesn't need words." -unknown
Noah's checkup with his pulmonologist went really well. The only issue we are dealing with is Noah has once again lost weight. His little body was working so hard to breath that he burned off more calories than he was taking in while he was sick last month. We have made some changes and hopefully he will gain the weight back as quickly as it came off.
I love how attentive Boris is when Noah is at his appointments. Boris will lick Noah's hands to distract him when the nurses or doctors are accessing him. For the first time Noah was able to have some blood drawn with out having 2 people hold his arm. I'm so glad we have Boris to be there for Noah.
Let's talk poop.......
Sorry Noah, he always hates when Deanie and I talk about if he has gone or not when he spends time with her and Todd on Noah/Kehres Day. But the last several months I've been at my wits end with Noah's bowels. He was either constipated or having blowouts on only 1/8 of a cap of Miralax. Which lead to not letting him enjoy one of his favorite things, swimming. He hasn't been himself in quite some time. He hasn't slept well and most importantly he hasn't smiled much. It has just broken my heart watching him, I had to find something to help him. I started researching the re-flux medicine he was on and this is what I found: dizziness,feeling jittery,diarrhea,stomach pain,nausea,constipation and headache. I can almost bet Noah has dealt with all of these for months. My poor little man......
I made an appointment his gastrologist and decided to stop giving him his re-flux medicine to see if it would help him feel better. Guess what? We started seeing his smile again!!! I started giving him some Melatonin to help him sleep better. He seems more awake and alert during the day so I believe it is helping. On Tuesday he saw his GI doctor and we had a good talk about Noah's issues. We decided together that Noah doesn't need the reflux medicine since he hasn't gagged or retched being off of it the last 2 weeks and instead of Miralax I'm giving him 1T. of Benafiber. I'm to say that it was what he needed. Noah just might be able to go swimming soon. Notice above I said "we" It feels so good to feel like we are part of a team and that I'm being respected as Noah's Mom. The doctors that we have been with since last May are wonderful. I'm sure glad I wiped the slate clean and started new.
Some of you might be wondering how Boris is doing..... he has been wonderful. He does his job so well. He knows when Noah needs a little extra attention, he will lick Noah's hands to redirect him when he is feeling stressed or anxious. He is so good on Noah's lap we are asked if he is stuffed. Boris is a great addition to our family.
Noah and fun Strutting is Mutt at the Richland County Fairgrounds today. Noah found a tie for Boris. Now they are ready for the game together. I was very impressed with Boris today, there was a lot of dogs and he was very excited to see all them but he didn't bark.
Dale, Boris' trainer was very appreciative and happy that we stopped by to see him. Dale has a Facebook page Pound to Service Dog, go check it out.
Noah also won one of their raffles. Too bad he isn't old enough to enjoy it. Time for some wine tasting ; )
Yesterday Noah had an appointment with his ENT. Only half of Noah's electrodes in his cochlear implant are working. That might explain why Noah has been taking his "ear" off. It must not be sounding right to him. Maybe it hurts? Who knows...` The Cochlear Implant team feel that it has gone bad because of Noah banging his head on his headrest. Something that he does when he gets stressed out or anxious. Noah has been on anxiety medicine since May and it has done wonders for him. Boris has also played a big part in keeping Noah calm during his day and when he goes to his many appointments. With that being said it is time to replace his implant. The surgery will take place as soon as it can be scheduled.
While Noah was in the hospital Boris came up to see him. I honestly believe that Boris helped Noah get better and may even saved his life.
Before Noah got out of the hospital he ordered Bark Box for Boris. It is a yearly subscription of toys and treats for dogs. What a great way to reward Boris for being a part of making Noah well.
It has taken me four months to finally sit down and blog about Noah's last hospital stay. I have slowly made my way out of the worst funk I have ever been in. With Noah being life flighted in January, my Dad passing away and Noah getting so sick in April that we almost lost him. I had hit rock bottom and struggled to get out of bed every morning. I was determined to enjoy life again and have fun. I also wanted to give Noah a great summer enjoying life as well,like taking Noah to the ocean again. Thanks Kim and Karen for helping me make that happen.
With all that being said I'm finally at a better place. I'm not 100% but I'm a lot closer then I was. Hopefully I can get through this blog post without any tears.....
Scott and I got home from our get away around 3am last Monday morning. I scooped up Noah. He was awake in his bed sideways and had rubbed his forehead raw. He was off the wall agitated and restless. After over a hour of trying to calm him down, I put him back in bed and laid beside him to try and get some rest.
On Wednesday Morgan had to return to work after her maternity leave and Liam came to our house. Isn't he just dreamy?
On Thursday I came to realize that I could no longer take care of Noah on my own. I took him to the ER.
They decided Noah needed to be life flighted again to Cleveland. They sent a smaller helicopter then before and I weighed 5lbs too much to be able to ride with Noah. I started to panic....
I then called Deanie Kehres and she sent Todd to the hospital to ride with Noah. What a relief it was to know Todd would be there to be Noah's voice and mine.
Watching them take off was so hard.....
I have never seen Noah so sick.....
Even FaceTime with Liam didn't make him smile.
Noah was having keeping his stats up so he was put on 15 liters on high flow oxygen.
Saturday night was his worst night. We were sure we were going to lose him. It was so hard watching his little body fight to breath.
Please God don't take him yet.......
For most of Noah's hospital stay Noah wanted me to stand beside him and hold his hand. My body was so tired and sore from standing but how could I not?
On Sunday everyone came to see him, even Boris. When Emily put Boris on Noah's lap he gave Noah a kiss and then walked all over his bed and then laid down beside Noah and fell asleep. It wasn't long before Noah was asleep too. The first time in days.....
I had a talk with Noah and told him he was the pilot and it was up to him to fight and get stronger.
He definitely listened..... he weaned himself off of the high flow by pulling it off.
Emily brought Boris again on Monday.
Noah was well enough for Boris to sit in his lap in his chair.
On Tuesday Noah was doing his best to get rid of the oxygen all together.
During rounds on Wednesday, the doctors decided that Noah would rest and heal better at home.
Noah and I were able to get out of his room and go to lunch while we waited on Scott to get off of work so he could come pick us up. Noah also went shopping in the gift shop. He picked out a turtle for Liam.
