Hard to believe Liv's been in the EI program for just about a year now and she had her assessment with her PT on Monday. Bottom line - she's completely caught up with her peers despite all the medical restrictions we had initially and even ranking a little bit ahead in some areas. Sue (the PT) and I sat there and talked about what we've been noticing her do lately - because of course Miss Liv doesn't always want to show off her new moves when we've got someone over evaluating her. So I went through the laundry list and noted that it seemed as of late taking her out into restaurants, particularly in the morning is becoming a bit of a challenge. Then Sue asked if I thought she was doing things that a typical 17 month old should be doing? Insert bad mommy here - I had noooo idea. Growing up all my cousins had kids; we've actually been averaging 2-3 per year in the familia since I was about 10 and I love them all and was very hands on; but paying attention to what they all did at specific ages? I sort of just left that to their parents.
So needless to say I just said "Mmm I have no idea what a typical 17 month old should be doing". Since Liv's always been a bit behind with all the normal milestones that I knew most babies did before turning one like rolling over, sitting up unassisted, pulling to sit and/or standing, etc I really just sort of pushed any timeline expectation out of my head. Sue to her credit just sort of chuckled and said that Olivia's doing absolutely fine and we have nothing to worry about right now. In fact of all the HLHS kiddos she works with, Liv is currently the only one who's never needed a g-tube placement. Please tell me that I haven't jinxed myself there for the Fontan.
The most important factor for Liv catching up with everyone else Sue believes is the fact that we have Grandparents watching her all week long. They're totally devoted to her and interact with her a lot socially and she's been exposed to lots of trips out and about to make sure she's getting all the visual and tactile stimulation that every kid needs at this age. So THANK YOU to the grandparents for being such a huge part in getting Liv to where we need her to be for the day to day.
The entire group of professionals is going to meet with Liv and I on the 12th and Sue feels that we can discontinue PT entirely for now and if we need to pick it up again after the Fontan. Olivia automatically qualifies for EI because of the HLHS dx so we'll just leave her case file open in the event that we need more help later on. For now, we'll just take it day by day.
Cinder-Livvy
Wednesday, August 31, 2011
Tuesday, August 30, 2011
It's On
Sorry for the lack of updates lately, a work trip to Rhode Island, a vacay to Mexico and then just slammed with everything here at the office has made for one busy Mama. We for sure have a date for the sedated echo - Liv's going in on September 7th at 7:30 am. It has been 8 months since her last echo and hopefully everything's looking peachy. Now that it's starting to get a little cooler in the mornings and evenings I think everyone who takes care of her regularly has noticed that she does get a little blue around her lips with the new cooler weather.
I am dreading this whole process quite frankly. She has had a really really tough time of getting over the fact that her schedule was shifted here there and everywhere to make it work while I have been on the road more lately and she's let everyone know her displeasure. To now have to take her in for what I think is overly invasive for the sedated echo just bums me out even more. But, on the bright side, since she'll hopefully be nice and relaxed, they (hospital staff) better take every opportunity to get all sorts of pictures to see what's going on "under the hood" as I like to say.
I owe at least some updated pics and a 17 Month post, more to come soon!
I am dreading this whole process quite frankly. She has had a really really tough time of getting over the fact that her schedule was shifted here there and everywhere to make it work while I have been on the road more lately and she's let everyone know her displeasure. To now have to take her in for what I think is overly invasive for the sedated echo just bums me out even more. But, on the bright side, since she'll hopefully be nice and relaxed, they (hospital staff) better take every opportunity to get all sorts of pictures to see what's going on "under the hood" as I like to say.
I owe at least some updated pics and a 17 Month post, more to come soon!
Tuesday, August 9, 2011
Leaving on a Jetplane - Again
Greetings from Midway Airport this morning
I'm currently waiting for my flight out to Providence, RI for a work trip and am not happy about it in the least. This morning as I was walking down the long empty hallway to my gate it felt like a breakup scene out of a movie and the viewer can and should be crying. I am growing to despise leaving Liv. Work has been crazy busy as of late for both Brian and I; not unusual to find either one or both of us working on weekends or late into the night. In the meantime the other just takes extra time and care to spend time with the Livster but this Mama is feeling stretched really thin. Darn - too bad I can't literally get stretched thin, I bet that would be a great money making scheme.
Besides my pity party this morning, Olivia has a new form of currency and they come in the form of Cheese-It's. She loves those little crackers, can't get enough of them and thus they are a huge motivator to basically bribe her into doing something that she really wouldn't otherwise do without a huge fuss. On one hand I feel bad bribing her, on the other hand, sometimes keeping the peace is worth it and while I wish it would be a piece or fruit or something a little healthier, I can get the all natural crackers to at least make it a little healthier. You can even ask her now when she's pointing in the general vicinity of the canister with said loot and ask if she wants a Cheese It to which you'll get a "Yeah!". It's ridiculously adorable and just something she started doing this past week.
On the walking front, she took off like a bull with gas and now has sputtered out. It's like knowing she can do it is enough and more often than not now, she just clings onto our shorts and puts her arms up like "Com'on people throw me a bone, you haven't seen me all day for cry eye". Yes, that is very specific and I'm sure it's very close to what's going on in that little mind. So that's that, stay tuned from more out of me assuming I have some down time on this trip or am feeling particularly blue like this morning.
I'm currently waiting for my flight out to Providence, RI for a work trip and am not happy about it in the least. This morning as I was walking down the long empty hallway to my gate it felt like a breakup scene out of a movie and the viewer can and should be crying. I am growing to despise leaving Liv. Work has been crazy busy as of late for both Brian and I; not unusual to find either one or both of us working on weekends or late into the night. In the meantime the other just takes extra time and care to spend time with the Livster but this Mama is feeling stretched really thin. Darn - too bad I can't literally get stretched thin, I bet that would be a great money making scheme.
Besides my pity party this morning, Olivia has a new form of currency and they come in the form of Cheese-It's. She loves those little crackers, can't get enough of them and thus they are a huge motivator to basically bribe her into doing something that she really wouldn't otherwise do without a huge fuss. On one hand I feel bad bribing her, on the other hand, sometimes keeping the peace is worth it and while I wish it would be a piece or fruit or something a little healthier, I can get the all natural crackers to at least make it a little healthier. You can even ask her now when she's pointing in the general vicinity of the canister with said loot and ask if she wants a Cheese It to which you'll get a "Yeah!". It's ridiculously adorable and just something she started doing this past week.
On the walking front, she took off like a bull with gas and now has sputtered out. It's like knowing she can do it is enough and more often than not now, she just clings onto our shorts and puts her arms up like "Com'on people throw me a bone, you haven't seen me all day for cry eye". Yes, that is very specific and I'm sure it's very close to what's going on in that little mind. So that's that, stay tuned from more out of me assuming I have some down time on this trip or am feeling particularly blue like this morning.
Friday, August 5, 2011
The Game Changer - Glenniversary
Today's just another milestone and anniversary in Olivia's journey but to our family, it's extra special. This morning marks the one year anniversary of Olivia's Glenn surgery. She went in to this surgery in pretty sad shape, leading up to the surgery sleeping through feedings and needing to be woken up. She was regularly turning pretty blue without doing anything but lay there and of course that dreaded GI bleeding. Olivia was in congestive heart failure as most babies get to during this "interphase" period between the Norwood and Glenn. The last weeks leading up to the Glenn it was a struggle to get 8oz of weight on her in 6 weeks - not good at all.
So around 2am last year I woke up with her to give her her last bottle pre-op and then again some Pedialyte around 6 or 7. Just as I was about to give her that bottle, the hospital called and asked if we could come in earlier. They had shifted the schedule around and wanted to take Liv in earlier. I think I was just happy to be getting it over with so we were at the hospital a little over an hour later. Olivia must have sensed that today was a big day because she was up at 2am and wanted to play and I sat there with her in the glider for a little bit thinking how different things have looked in the last year.
She went in looking pretty sad and came out a few hours later so pink all over. The four day stay for us was a breeze but in the meantime there were so many other catastrophic things that happened to the families around us that August 6th still haunts me recalling all the code blues for the PICU, PSHU and other pediatric areas - 5 in one day. The night before discharge we actually saw her sat at 100% for a few minutes and to this day she can and will sat in the low 90's. In the first 10 days after the Glenn Miss Liv packed on an entire pound (and it was in chub not excess fluid) - her trademark cheeks and rubber band wrists made their appearance and we began to really live life. I try not to look back too often because I don't want to lose sight of what's going on in the now, but days like today make me ever more appreciative of that little girl and the miracles of modern technology.
So for now I'm gonna be an emotional Mama so deeply thankful that the Glenn was a game changer that has really allowed Olivia to blossom into the beautiful little girl that now walks up to me when I get home from work and gives me a smooch - the first time that happened was one of the best moments of my life.
So around 2am last year I woke up with her to give her her last bottle pre-op and then again some Pedialyte around 6 or 7. Just as I was about to give her that bottle, the hospital called and asked if we could come in earlier. They had shifted the schedule around and wanted to take Liv in earlier. I think I was just happy to be getting it over with so we were at the hospital a little over an hour later. Olivia must have sensed that today was a big day because she was up at 2am and wanted to play and I sat there with her in the glider for a little bit thinking how different things have looked in the last year.
She went in looking pretty sad and came out a few hours later so pink all over. The four day stay for us was a breeze but in the meantime there were so many other catastrophic things that happened to the families around us that August 6th still haunts me recalling all the code blues for the PICU, PSHU and other pediatric areas - 5 in one day. The night before discharge we actually saw her sat at 100% for a few minutes and to this day she can and will sat in the low 90's. In the first 10 days after the Glenn Miss Liv packed on an entire pound (and it was in chub not excess fluid) - her trademark cheeks and rubber band wrists made their appearance and we began to really live life. I try not to look back too often because I don't want to lose sight of what's going on in the now, but days like today make me ever more appreciative of that little girl and the miracles of modern technology.
So for now I'm gonna be an emotional Mama so deeply thankful that the Glenn was a game changer that has really allowed Olivia to blossom into the beautiful little girl that now walks up to me when I get home from work and gives me a smooch - the first time that happened was one of the best moments of my life.
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