Poor Mike was so upset by the time I got home yesterday I thought he was going to burst. Jude was not eating like he should, and crying constantly, therefore increasing Mike's stress level. By the time I got home they were all so worked up I could cut the tension with a knife. So I tried to keep as calm as possible determined I was going to get Jude to eat. Mike was upset thinking that Jude was going to have to take another trip to the hospital because we had less than an hour to get liquids into him. Without liquids Jude's seizure medication can cause serious issues. So I gave Jude some Tylenol thinking this may be another teeth issue, and I laid him down for twenty minutes, while I took a bath to wash off any stress. Once I got out of the bath I changed Jude's clothes into a comfortable onsie thus waking him up. I then warmed his milk up so it would be easier for him to take, and sat down taking my time getting him to eat. He ended up eating 9 ounces in one sitting. I am sure Mike thought I just think I know it all, but I didn't. It was just a change of people, and a change of scenery. I am sure Mike's stress level contributed to Jude's stress level, and they just needed a different person to step in. In this case it was mommy, and Jude snuggled with me for a long time, he didn't want to be put down. This insured me that it was his teeth, and he was just hurting.
After Jude ate, and had snuggle time he was ready to play. I put him in his crib while Mike and I watched a movie, and I kept hearing his famed barnyard toy go off. After I would hear, moo moo, peep peep, I would hear a shrill laugh, and then the toy would start over again. That crib toy was the smartest thing I ever bought. I would like to confess that the rest of the night went wonderfully well, but little Jude decided to play night owl again. About 11:30 I called for Mike, and he came to entertain Jude for a bit while I slept. They finally came in about 1:30, and Jude was still asleep when I left for work this morning. I know it's so stressful for Mike at times because Jude's situation is not normal. Would I prefer to be at home? of course. Am I thankful for my job? 100%, but I still miss my children. I also know Mike needs a break sometimes.
So while upset last night Mike said he thinks the stem cell possibility is chasing a unicorn. I don't really think he feels that way, and with investigation I think he will find what promise it has. I believe he feels he is betraying Jude if he researches the information like he wouldn't be accepting Jude how he is. It's a matter of accepting Jude, but seeing what may benefit him to help him have a better life. We do that with all our children........don't we? I did talk to a company yesterday that is extracting stem cells from full term cord blood. Since the cells are actually extracted from the blood and then infused there is no reaction. This plan is ran by three doctors, and they are going to evaluate Jude's medical records, and give me their honest opinion. They are looking at everything for free, which I thought was very thoughtful. I did some research on one of the doctors, and found a multitude of write ups on him, and videos. The cases and success stories are amazing, one of the cases was a blind CP patient who could not speak, can now speak, and see. I understand though that for every success story there is probably a failure. Regardless, it's fascinating. If Jude is ever a candidate I am not sure how we would afford the infusion. I guess we could hold a large fundraiser like some other families do. Can you imagine how great Jude's case would be for research?? I mean I have tracked everything from the very beginning, and to then follow a possible stem cell infusion, and whether it shows some form of success, or not it would be interesting. In my eyes Jude has already helped other moms, children, and families, and maybe this information would be helpful too? To help data on whether stem cells can help with those neurologically affected, or whether they cannot.
So Em is still practicing her softball, and we let her batting coach know she didn't make the other team. He seemed very frustrated that the coaches did not complete a practice swing prior to starting the batting. He then explained to Emily that any time she tries out it is reasonable to ask for a practice swing, and then advise the coach if the machine is pitching the balls to high or low. He explained that "there is no coach that would want you to swing at a poorly thrown ball, so why would you in try outs?". I explained that the primary reason she didn't make it according to the coach was her fielding, and grounding. He then told her she has to reach, dive, and get under the balls. I explained we were thinking about bumping her up and putting her in 12u rec, but he didn't seem that happy about that. I think he wants her on a team to improve, but that's easier said than done.
Here is a picture of Jude from last night, I love his cheeks!
4 comments:
Awww...Jenn! You are so wonderful!! I am so happy Jude finally ate and all is well! The stem cell possiblities is amazing and I hope and pray that you find help in that. I am not too educated on it, but you are definately helping many of us understand a bit and how important it is. Jude is so lucky to have a smart and determined Mommy! I just think the world of you.....I want you to know. Good Luck to Miss Em in her softball! She will be just fine. We did bump Maddie up at Em's age due to her not being as challenged and it helped her alot! The pitching was alot faster and her hitting actually improved. After that we went select, so that may help Em too. Just a thought.
HUGS,
Amy
Precious little guy! I love this shirt! :)
Mike has made me think. I never once thought about the therapy from that perspective. But, you can think of it as that, a therapy. You wouldn't deny Jude Physical Therapy, right?
I think that you are really on to something, Jenn. I believe in stem cells because I have seen the miracle firsthand.
We were prepared to have Parker live with us forever because of her special needs. This may still be the case, but at least now she may have a chance at a "normal" life (whatever that is). Who knows what the future holds. I'm just blessed by our children - just as they are.
Love,
Amy Hendrix (Turtlemom)
I have to say that I love Jude's shirt, too ;-)
Jennifer ~ I have tried to follow your blog, but it's private. Thanks for always commenting!
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