Wednesday, December 30, 2009

Great beginning

oooohhhh, someone sneaky stole a photo and caught Nicholas smiling. (thanks Allie!!!) Now we just have to work on his brother. Both boys absolutely LOVE the new exercauser. Alex was playing hard in it and just "resting" his eyes before mommy snapped this one. I swear they have a sixth sense when the camera comes out.....but the camera will persist, ha,ha!!!



We've had a very good week. It took the boys quite awhile to get back to where they were feeding wise and weight wise since their stomach bug but this week they seem to be back on track. For the last two weeks, we have been back to middle of the night feedings to get in extra calories and we are hoping that we will all be getting some more solid sleep soon.

We saw Pulmonary yesterday and it was a GREAT visit. Alex is back up to his weight from two weeks ago before he got sick (12 pounds, 12 ounces!!!) The doctor thinks he looks great. We unfortunately didn't get a weight on Nicholas because he's doing so well from a pulmonary standpoint, he's been discharged!!! But Nicholas has been downing his bottles again and feeling quite solid!!!

Anyway, back to Alex and the appt, The doctor discontinued THREE of his pulmonary medications. No more diuretics or nebulizer treatments. Each one was given TWICE a day so this is a big deal. He thinks he is likely outgrowing his medications so they that were probably not doing much for him anyway. Woohooo!!!!!! We'll just keep a close eye on him as he tapers off of these and hopefully they will be gone for good.

We also talked about his oxygen again. His oxygen saturation levels remains 99-100% on the tiny bit of oxygen he's on. The pulmonologist will send his office note to the cardiologist about this and we will follow up with his cardiologist in a few weeks. He will likely want to do another Echo (scan on his heart) before any decisions can be made to discontinue the oxygen but I am hopeful!!!

Alex also had a couple very rough nights getting used to sleeping in his helmet. Initially he'd wake up every half hour to hour to cry, which broke our heart. He was having a really hard time even moving his head in it initially and obviously couldn't get comfortable. He'd then wake up his brother which didn't help matters. We have tried working out some of the kinks in the crib to make him more comfortable and after a couple of more nights, we are relieved to say that he's beginning to sleeping much better! He is such a trooper!!

I think the illness and the new helmet has pushed Alex back a little bit more and we were getting a bit concerned that it might hamper him further. He could barely lift or turn his head and I think between the fatigue from having been sick and the helmet, I was worried how long it would take him before he was able to get back to his baseline, let alone have energy to try new stuff. Again, the "are we doing the right things by him?" came into mind again.

I was also referring to "the book"----you know the one that says what your baby "should" be doing about now. Its helpful to use as a guide but it can also stress you out as a parent if your baby is not doing literally EVERYTHING on the "supposed to" list by a certain time. (Heck the type A people even skip ahead and worry about the future stuff already too, not that I would happen to know about that, just something I've heard.....) So anyway, I was speaking to the therapist about my newfound concerns just today after reading the book. She reassured me and then went on with her visit with both boys. Mark unfortunately doesn't usually get to be around for the visits because work tends to get in the way so I went ahead and taped a couple small segments from the visit for him and thought some others might enjoy it too.


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Yep, they both rolled all the way over for the first time today!!!!! What are the odds of that? Both of them hitting that milestone in the very same day, heck in the very same hour???? Just incredible. I was just asking the boys therapist when she arrived today if she was concerned that they still hadn't rolled over fully yet "because the book says that they should be by about now......" ha,ha. Guess the boys just read that chapter and decided to go along with things! Its funny how you worry about something and then when they've accomplished it, you think, it was silly for me to worry, I know they have and will always do things in their own time. Why can't I just relax and enjoy the ride???

P.S. How do you like our new carpet? I've been wanting one for awhile now, you know a little more cushion on the hard wood floor. I was imagining something more neutral toned......but what we won't do for these handsome little boys!!

What a great beginning to the new year!
Hope you all have your own great beginning, Happy New year!!!!!!

8 comments:

Ben, Jamie and Joshua said...

What a great beginning to the new year...way to go, boys!!! Burn the book, Holli. The book is for average children....and who wants their children to be average anyway?! Your boys are handsome and strong and tough and will do things when they're darn good and ready. So just enjoy each stage. Pretty soon you'll be wondering why you ever worried in the first place. :) Happy New Year! Hope to see you soon!

Dorothy said...

Holli,
What a great way to end one year and begin another. Your boys are beautiful. I am really greatful for all your updates. Hope this new year brings continued improvements and that soon you won't have any thing to worry about. You are always in my prayers, every night. We love you all and wish we lived closer so we could be of some help. Love Grandma

cfallone said...

What rolling beauties!!! Yes, bury the book and write your own. You have an awesome way with words and your chapters would be much better than any "typicaly" baby book. Besides, you even have the most handsome acters when they make your book into a movie :)

anadoptedangle said...

Happy New Years and happy rolling babies are great to see :) Keep 'em going!!

Anonymous said...

Hello Holli!

I have found your blog through Spina Bifida Kids, after you replied to my daughter's questions. (hopefulmumm) Thank you, thank you, thank you for being such a wonderful support system! I can't begin to tell you what an impact you and other's on here will have for my daughter,"son",grandaughter, and grandson-to-be!

To say we were thrown for a loop would be an exageration. My heart broke for them when they came home with the diagnosis. I wasn't sure what to say...so I said a prayer. I told them I believed that God sent this special gift to very, very special parents who will love and care for him unconditionally. I know it has been a roller coaster of emotions for them. And so,so many questions!

We live in Jamestown, and they will be delivering in Children's Hospital in Buffalo. I am thankful she has found a network nearby to help. Another Mom from Lancaster contacted them and wants to meet when they are in Buffalo next week.

You and your husband have been blessed times two! But how very fortunate for your boys to have YOU as their parents!! Every day is a turmoil of some sort I am sure. But keep your strength and faith strong...God is always with us even in the most troubling times.

If you would like to contact me my email is smilinmysnk@yahoo.com. I would love to hear from you!!!

cmn3909 said...

your boys are adorable. I am an adult that has SB born with it 39 yrs ago. Would love to encourage you on this journey. Please check out my blog at your leisure.

Holli (and Mark) said...

smilingmysnk: I sent you a note to your email, thank you so much for your note. It means so much to me that maybe sharing my story could help you or your daughter a little bit in your journey, so many other bloggers did that for me while I was beginning this road (and still do).

cmn3909--I tried to follow your link but it was broken--I would love to check out your blog if you could leave me the address. THANKS!!!!!

Dollface said...

I want you to know that you should NEVER read those stupid books. My daughter has spina bifida, hydrocephelus and etc. I have learned to throw away the papers from the doctors office and etc. because comparing a special child to another child is just depressing! Your boys are so adorable!