A sweet September

Tonight begins the Jewish new year and we have had a very good end to 5769, a year that started well (this was just about the time last year we had our ultrasound and found out we were having a baby boy), got very rocky, and seems to be ending on a high note. I am very grateful and prayers held special meaning for our family today.

Our appointment was great. The behavioral specialist was so pleased with Aaron's progress, and really surprised! She said that he has some increased tone in his arms and legs, but that doesn't seem to be affecting what he can do. Most wonderfully, she thinks he will walk and even run. There is no way to convey in words how I felt...I am not even going to try. I am so proud of my little Cinderella Man and stand in awe of his determination. The appointment was just before his daddy's birthday, (Happy Birthday Honey!) and Matt said it was the best birthday present in the world.

Since the appointment, Aaron has began to pull to stand on low things. He is a little dynamo. His Aunt Andrea was here for the holiday, and she is amazed by him too. Since she hadn't seen him in person for a while, his progress was even more dramatic for her.

Feeding continues to be challenging. His solid foods have dropped off, but I seem to have found a trick or two today to help. I am waiting to see if the soy formula is completely acceptable to his system before I decide what to do about pumping.

Sam is great. I have a video of him golfing I will add on next time. Until then... good night!

10 Things I Know for Sure

1. You cannot plan for every contigency. As much as I might like to. I thought I could. I thought I could control my life. I was WRONG!

2. You can't predict the future. Really. At all. Since as of late, I am batting whatever a bad batting average is, (help me out Sam) I am really doing so much better at staying in the moment. This does not stop me from daydreaming about maid of honor toasts/2nd honeymoons in Jamaica/and I'll admit, the existence of a little daughter for us, but it DOES stop me from getting to much beyond today and maybe next month where Aaron is concerned.

3. When you are at your lowest,if you are lucky like me, no one can comfort you like your mother. That is what I have, and that is what I must be for Sam and Aaron.

4. I really like staying home with my kids. For now (see number 2!)

5. My 4 year old boy is a sweet, sensitive caretaker. On a rough drive home, he sang every song he knew, made every silly voice and face, to try and comfort his crying brother. Long after I had given up. I am not sure what the world does to men to squelch that instinct, but I hope I can help him keep it.

6. Girlfriends, really good girlfriends, are crucial.

7. My husband is a mensch. Even though he tortured me by buying forbidden Jewish baked goods. Too much of that and I'll have to insist on conversion.

8. The country will be better if Barack wins.

9. The doctors who resuscitated my baby, the neonatologists who put the cooling cap on him, the parents who allowed their children to be studied years ago so that this technology is now available, the nurses who watched over him... these people are my heroes.

10. Aaron is doing really well and has more wonderful surprises for us. No matter what the doctor visit tomorrow brings. I'll keep you posted.

Crawling

So, the most exciting news. Aaron is crawling. I can't really believe it. It is early for crawling and I was even worried that it might be somehow due to increased spasticity, but his wonderful PT Pam said that is not the case. He is so cute and determined, he inches his way around the living room. The video here doesn't really capture it, but it is all I could get after SEVERAL tries, so it is a start. I can remember when I wondered if Aaron would ever sit unassisted- so crawling early is really beyond my wildest dreams. He also sort of pushes up on his legs against the cushions. He is still often on tiptoes with that, but I am DONE making predictions or diagnoses for Aaron. Way to go proving mommy wrong little man!



Sam has had a little bit of trouble with the new development, mostly because Aaron is getting extra attention and into Sam's stuff! Mostly, though, he takes it in stride. We start almost every morning with the following song... sung by Sam

" Good Morning to you, Good morning to you, your brother sure loves you, and your mommy does too!"

What a special person he is.



Heard this week about another cool cap baby. I have been thinking of that poor family and hoping the baby does well. This week at the hospital, EVERYONE asked about Aaron. It is so nice that people care, but it gets exhausting. Thank goodness that he is doing so well, or else it would be even harder.

These are not great videos. One is too dark, but I can't figure how to delete it. The other doesn't show what he can really do. I will try to post better ones soon.



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Links

These are a mix of uplifting and sobering links about kids with hypoxic injuries and cool cap. I like looking at both. Even the kids with severe delays are (as should be obvious but sometimes isn't) such individuals and cherished.



This is a happy story about a cool cap survivor

http://www.stuff.co.nz/auckland/4635492a22399.html-

This is one of the study results. This is not the strongest of the trials, but still showed some improvement with cooling.
http://cel.isiknowledge.com/InboundService.do?
product=CEL&action=retrieve&SrcApp=Highwire&UT=000227096800023&SID=2Dh2dP9cLNfM4ci8mKo&SrcAuth=Highwire&Init=Yes&mode=FullRecord&customersID=Highwire

The pilot study
http://cel.isiknowledge.com/InboundService.do?product=CEL&action=retrieve&SrcApp=Highwire&UT=000226406500002&SID=3DM4383H1Mj8cilfOla&SrcAuth=Highwire&Init=Yes&mode=FullRecord&customersID=Highwire

A study of kids with neuro injuries in general with outcomes.
http://pediatrics.aappublications.org/cgi/content/abstract/109/1/26?ijkey=2450d0eb99877066797b4937c2e18c8a988bb896&keytype2=tf_ipsecsha

One of my favorite stories
http://www.natus.com/documents/60099-FLB-EN0727R.pdf


The UM press release-
http://www.med.umich.edu/opm/newspage/2004/coolingcap.htm

This is a friend from my uterine rupture support group. Her little boy had the cooling cap and is unfortunately severely disabled.
http://www.liamsmile.com/LIAM_SMILE.html

This site is so wonderful describing a mom and son with CP and how he has done. He is off to college :). If Aaron has CP, I think this will be a useful roadmap.
http://www.thecpchild.com/

Well, that's it for now. I will probably do this again sometime. I am neurotic about googling these sites.

Milestones

It seems like that word is always associated with Aaron in my mind, but my parents just celebrated a big one---35 years! Congratulations Mom and Dad!

Matt and I will be married 10 years this summer. I think so far, we are doing pretty well with all the changes this year has bestowed upon us. When I woke up from the anesthesia after Aaron was born, my first thought was "did the baby survive" ? My second thought was "how will Matt ever forgive me?". He says that no forgiveness is necessary---and I have never felt blame from him for one minute, which I am grateful for. I can honestly say that despite the ups and downs of daily living, he has been a rock for me at times, and me for him at times. Not to mention that, thank goodness...we are both voting for Barack! I am glad we aren't a "mixed" marriage politically :)

Heard today about another baby who was sent from SJ to UM tonight for cooling cap. I really felt a pang thinking about that poor baby and family. If they ask me to go speak with her, I will. A fellow physician whose daughter is Sam's age and was cooled came to speak to us, and it helped a little. Of course, you only really care how your baby does, but it does give you some hope.

Rounding at SJ remains hard. The first day of the week is always the worst. Every time I walk past Triage room 1, I remember hearing that slow heart rate and the gasp of the nurses with the blood. I try to block out the thoughts but it is almost impossible. Luckily, once I get to the Pediatrics side of things, I feel better. I am really glad that I stayed over in the delivery side of things after Aaron was born, because the Mother Baby Unit still feels like work turf since I was never a patient there.

Speaking of SJ, last Thursday I ran into the neonatologist and pediatrician who resuscitated Aaron. The neonatologist was the one who told me he survived but gave me all the disastrous news about his condition. I remember she had tears in her eyes then. We were certainly acquainted, but I didn't know her well prior to Aaron. I always thought of her as seeming very confident, no-nonsense, all business. Turns out she definitely has a soft side. I took Aaron to a conference and she was so excited to see him. She practically grabbed him from me to hold him and was amazed by how he was doing. She actually got very emotional. She had told me once before that Aaron took years off of her life (yeah, me too!) and I could tell he was special to her. So of course, I absolutely adore her and will never have words to thank her.

No pics/video today, I will add some soon.

Two steps forward...one step back

Whew. It has been a rough couple of days. I am not sure why, but Aaron is back to his old hatred of his bottle over the last few days. His eczema is also worse, so I am wondering whether I had an accidental exposure to egg or dairy. The only thing I can think of is when we ordered in Middle Eastern food. I asked about it, but I am not sure how seriously they took my inquiries.

Anyway, yesterday, Sam was home from school for the whole day, and I was so looking forward to spending the day with him. All morning, Aaron cried and fussed. I couldn't get him to take more than 2 ounces. So of course, Sam was left to play by himself again. He is starting to get wise to the fact that Mama always has to take care of Aaron. I was so upset I had to put him down to fuss and call Matt for moral support. I was crying by then too! Finally, I just packed Aaron up and we went berry picking as planned, which was fun. Then Aaron screamed the entire 25 minutes home, despite me trying to feed him several times. When we got home, he ate as if nothing had happened. It just makes every attempt at normalcy difficult. Especially since I am not one to sit home a whole lot.

As usual the afternoon and evening was better. Our babysitter and dear friend came by and couldn't believe how good Aaron looked. He took his solids great. Matt was gone at a meeting and the boys and I had dinner together. Aaron was doing so well with solids that I gave him his first teething biscuit (dairy free) which he loved. He fell asleep and I stayed up getting things ready for the next day. Just when I was ready to fall into bed exhausted, he woke up. He then screamed horribly for almost 2 hours. I was ready to take him for a drive or to the ED because he was nearly inconsolable, when he finally fell asleep around 130 am. He slept for a couple of hours, was up at 330 and then I had to get up to make it to a meeting for work at 530. Then once again, bad bottle this AM. He continues to do well with solids, so that's good.
Maybe it was the biter biscuit...

Anyhow, today, I was pretty exhausted. We had a good experience seeing the ladies who saved Aaron's life, which I will save for another post. He also had his hearing test, which he was not very cooperative for and needs to be repeated in a month. By the afternoon, I felt sick with fatigue and frustration. I have tried hard to not interfere too much with Matt's hours at work, since he is our main earner now, but when he called, I asked if he could come home early. He did- thanks honey- and I just went to bed for an hour and a half. I didn't even make dinner and you know what, we made do! The sleep was indescribably wonderful! I feel so much better and a lot better able to care for Aaron and Sam tonight and tomorrow. I am hoping for a better day tomorrow...

Aaron's Eyes

Me with the boys and their cousin at the beach

Well, another day of good news. Aaron saw the opthamologist today and he does not have a lazy eye. Yay. He was evaluated due to his history and Matt's family history of lazy eyes. The whole process was tiring as we were there for 2 hours, but I am relieved he won't have to wear an eye patch. The opthamologist had not heard of cool cap (surprising since he is peds opthy) and was very interested to hear about it. He said Aaron doesn't need any other testing until he does the picture chart at the peds office at 3. I quickly ignored that piece of info, I don't like to look that far ahead. Speaking of eyes, I am still not sure what color Aaron's are going to be. They are sort of a greyish blue now. The shape resembles Matt, maybe the color will be hazel more like me. Or just uniquely Aaron :)

Feedings are going much better. Though he is not taking appreciably more EBM/formula, he is taking his solids a lot better. Today he actually seemed excited about his peas and cereal, more like a typical baby. And his bottles are going down more smoothly. The food allergy angle seems to have really helped, so it makes this crazy diet worthwhile. Though I really miss ice cream...not that I NEED it :)



He is starting to get around the living room like a fast inchworm. Sam was my sloth, Aaron my worm! However, he is getting better on all 4s, crawling not too far off. He already likes to crawl to Sam's stuff, which has caused some irritability in big brother. Sam wanted to know if we could send Aaron back to G-d. I guess that question was bound to happen!



Speaking of Sam, he said the cutest thing today...we were getting out of the car and he says, what can I help you carry, Mama? I love that he still calls me Mama, too.



Well, I was able to make a video, but it is really dark, so I am going to try again. I may need to ask my sister's SO for computer/camera advice :).