Wow! We finally got a formula change for Janna and the result has been surprising, even better than expected. Not only has Janna not had any major reflux problems on this Formula; Nestle Compleat, she had the best night sleep that anyone can remember her having - ever! Previously we were lucky to get a straight 6 hours, this would be considered a "good night's sleep". Last night she slept for 9 and a half hours! I'm so happy about that I could track down the creator of that particular formula recipe and give him/her a big Thank You hug. Of course I still do not like the idea of only giving Janna the same formula for every meal day in and day out so we're going to try a home made blenderized diet in the mornings and see how it goes. One thing is for sure, we've moved on from Pediasure and will not be looking back.
Of course sleep is still a bit of a premium luxury with Baby Alexa thrown in the mix. She's still nursing frequently every 2-3 hours and growing like a little weed. At around 9 weeks old she's now out of the 3 month old clothing and into 3-6 or 6 month sizes. She's moved up a diaper size too, I'm a bit concerned that she'll be out of the small size G-diapers before we can use up the refills. (Which I had ordered back in December from a third party online vendor who will remain nameless, but still have not yet arrived.) We've been using disposables in the meantime and Alex is now in size two. When I opened the new package And put the first #2 diaper on her I noticed the Elmo on the waist band and felt a wave of disappointment..maybe even a little bit of depression and it took me a few seconds to realize why. These diapers were the very same that had been used on Janna when we were inpatient at BCCH in December of 2008. She was 5 months old and we were in the midst of our battle with the seizure monster that was slowly stealing her from us. It was surprising to me that the presence of one little illustrated Sesame St character could evoke such an emotional response. I guess I am a little PTSD after all.
A final thought, I've heard many instances where having a special needs child stresses a marriage to the breaking point. When I'd hear these stories I'd thank my lucky stars for the man I'd married thinking that could never happen to us. More recent events have brought me to realize that even the strongest relationships can be tested and that, no my marriage was not immune. Not that I'm under the illusion that we weren't susceptible to other challenges, but Janna was a huge game changer for us.
My husband and I used to thrive on adventure, getting out into the mountains and exploring new territory. Janna came as a surprise to both of us, we hadn't planned on a child together. After her birth and what followed, I saw the road ahead as one of the biggest mountains I'd ever climb, not sure if I'd be rewarded with a view or pummelled by storms. I've trod up this trail the past two a half years with my head down, determined to reach the top. I knew my husband was falling behind but thought he'd catch up eventually. It wasn't until I looked up one day and saw him climbing back down that I'd realized he was lost, and retreating to more hospitable terrain. Do I follow him back down? Memories of the warm sun, carefee days in the flower dappled meadows, traveling the majestic forests and drinking from cool clean streams fill my head with a sad yearning for what once was. Then I look at my daughter; my beautiful Janna, and know I'm right where she needs me to be. So with a heavy heart I take one last look downward. I say my goodbye and up I climb shouldering the harsh weather through that moonscape with her because she deserves above all else to get to the top of that mountain.
Goodbye Tim, I'm sorry for not being the wife you wanted me to be, sorry you couldn't be the husband I needed but I'll never be sorry for our daughter.
Monday, February 21, 2011
Monday, January 24, 2011
Janna's new toys and Alexa is getting bigger.
The new year has come and we've been busy with the new babe and Janna. Janna has some new light toys that she really likes:
And Alexa is discovering all of Janna's old baby toys:
Janna now has had her Peg Perego stroller adapted with a specialized headrest, foam lat support and proper harnesses to help make it more appropriate for her. We were so delighted to have this done as it makes that seating not only more appropriate but also SAFE to seat her in. She can't arch out when properly clipped in and she doesn't arch as much because the headrest supports her head yet still allows her some movement to each side. Janna has also had her Pony walker/stander adapted to help keep her in it without arching backwards. It does do the trick but the jury is still out on whether Janna will adapt to the adaptation. The only downfall in the way the back and head support in the Pony has been built is that it still will not allow her to bring her body up straight - it keeps her a bit leaning forward (prone) while standing so it's still not an optimal position. She's didn't mind it at first but now she's starting to show us she's not totally thrilled - perhaps we'll figure that one out yet - it may need some additional adjustment.
The best news ever is that Janna's long awaited "Cuddle Bug" adaptive stroller will be shipped to us on the 28th of this month. We really missed it after we had to return the loaner. My Insurer has said they will cover it under Janna's "lifetime maximum" for mobility equipment which leaves me with mixed feelings as this obviously isn't the last time we'll need to purchase mobility equipment for her. Truth be told I'd rather they have only covered the $2K for a regular wheelchair (not motorized) and let us go to my husband's health spending account to claim the remainder - that would have left us with more flexibility in leftover funding should we need to access insurance funds for more equipment in future. I guess maximizing our funding options isn't in the insurer's interest. :) (duh!)
Oh well - my motto lately is lets worry about today and let tomorrow's challenges be dealt with when the time comes.
Janna now has had her Peg Perego stroller adapted with a specialized headrest, foam lat support and proper harnesses to help make it more appropriate for her. We were so delighted to have this done as it makes that seating not only more appropriate but also SAFE to seat her in. She can't arch out when properly clipped in and she doesn't arch as much because the headrest supports her head yet still allows her some movement to each side. Janna has also had her Pony walker/stander adapted to help keep her in it without arching backwards. It does do the trick but the jury is still out on whether Janna will adapt to the adaptation. The only downfall in the way the back and head support in the Pony has been built is that it still will not allow her to bring her body up straight - it keeps her a bit leaning forward (prone) while standing so it's still not an optimal position. She's didn't mind it at first but now she's starting to show us she's not totally thrilled - perhaps we'll figure that one out yet - it may need some additional adjustment.
The best news ever is that Janna's long awaited "Cuddle Bug" adaptive stroller will be shipped to us on the 28th of this month. We really missed it after we had to return the loaner. My Insurer has said they will cover it under Janna's "lifetime maximum" for mobility equipment which leaves me with mixed feelings as this obviously isn't the last time we'll need to purchase mobility equipment for her. Truth be told I'd rather they have only covered the $2K for a regular wheelchair (not motorized) and let us go to my husband's health spending account to claim the remainder - that would have left us with more flexibility in leftover funding should we need to access insurance funds for more equipment in future. I guess maximizing our funding options isn't in the insurer's interest. :) (duh!)
Oh well - my motto lately is lets worry about today and let tomorrow's challenges be dealt with when the time comes.
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