Tilted Forum Project Discussion Community - View Single Post - Our daughter insisted on an early arrival

j8ear · 07-21-2005, 11:03 AM

Hello fair followers of our saga.

Today is j8earette jr’s due date. Today she is an adjusted age of one year.

Over the course of the last few months she has progressed admirably, but still lags a little behind the curve even for her adjusted one year.

She is not crawling or pulling herself to a stand. She is able to sit comfortably, but not yet sitting herself or even able to roll from back to front. Front to back is no problem, but only by leading with her left hand. Most recently she has developed an ability to rotate on her butt, at first clockwise only, but now she can spin in both directions. She likes to use her arms as wings and keeps them straight out to her side while making small movements with her legs out in front. It is an absolute riot to watch.

She has two words in her vocabulary, that being dida and mamama. She has plenty of sounds, grunts and noisy outbursts of excitement and exasperation, but only uses dida when I walk into the room or to otherwise refer to me. This is definitely the highlight of my life so far. The missus doesn't buy it, but I'm certain that she also has mamama getting up to speed and consistently uses it to refer to her and her exclusively.

She is a stout and solid 19 pounds 7 ounces currently and has been pretty stable here, having seen upwards of 20 pounds to as low as 19 even, for the last few months.

One thing that has recently surprised me is how this little warrior is anything but delicate. She is amazingly strong and able to withstand the day to day bumps and knocks that an infant who falls over a lot, experiences. It's amazing really. She just shakes it off and goes about her business. One of the funniest things is her method of trying to sit. On her back, she tries the crunch method, i.e. she tries to bring her head straight up by flexing at the neck and abs. She doesn't get very far, except for a litte red in the face, and surely but slowly we're introducing her to the ‘roll onto her side, and use an arm to push herself up to a sit’ method. She's very close, I'm convinced and the experts assure us.

She continues to regularly see a speech (feeding), occupational (her occupation is playing) and physical therapists. All report excellent progress, and utter amazement with her strength.

She’s got 8-10 teeth poking through, and is definitely cutting more, as her agony would indicate. We’ve tried everything from Tylenol (tolerances too high, I think), to Orajel (causes her to vomit). The only thing that has worked so far is lemon slices. Although the novelty of this is wearing off, I think, so soon enough it’s going to be a matter of her strength just struggling through. While I hate to see her in pain, I am completely confident in her fortitude, as this is nothing to what she has already been through.

Feeding continues to be our biggest challenge as she remains dependant on her PEG. She is not particularly fond of the spoon and even pedialyte via nipple is less about sucking and more about the nice cool temperature of the drink.

She was evaluated a few days back, overnight, in a sleep study, and while the results are pending, the technician, and the missus, saw no indication of apnea or oxygen desaturations. It would seem that the overnight oxygen blow by, will be coming to an end, in the very near future.

We have had great visits with GI and Cardiology recently. Her reflux is in check, and her formula and caloric intake are excellent. Her dietary needs have graduated to more reasonably priced recipes, and her vitamin needs are adequately addressed by a Flintstone's. I take great pride in my daily routine, using a pestle and mortar to grind up a pill and dissolve it in water so it can be injected via syringe into j8earette's PEG tube. Her PEG site is in excellent shape, and we’ve learned how little it really bothers her by observing how she pulls and tugs on it herself.

Cardiology recently was one of the most encouraging visits we've had to date. Her cardiologist has traditionally been VERY cautious and sparring with any good news and always been very careful to make sure we are aware of how precarious our daughter's situation really is. Our most recent visit, however, which included a sedated echo, resulted in this very reserved and brilliant pediatric cardiac surgeon actually smiling, and while only being 'cautiously optimistic' was markedly changed from all previous appointments. I dare say he was actually encouraging. He continues to see abnormalities, and also believes that some cardiac hypertrophy (which I incorrectly labeled myopathy in a previous post), is definitely developing. This is the result of one side of heart having to work harder then the other. In essence the muscles on one side get stronger then the other. He’s not all that concerned about it, but wants us to be aware. He wants to continue monitoring her, but the next visit won’t be for a year.

Our most troubling visit since my last update was with genetics. Previous visits with genetics indicated some possibility of a genetic disorder called Noonan’s Syndrome. The geneticist wasn’t convinced this was a fact, and had led us to believe that the range of genetic disorder possibilities was from none to Noonan’s Syndrome. This visit however, the subject of another disorder called CFC surfaces. After all the recent progress, we were unprepared for this, and honestly of the mind set that whatever they could throw at us wouldn’t matter in the least. No change in our approach, no change in our care, no change in anything, but when I asked why this was being mentioned, the geneticist revealed that the likely hood of an individual with CFC living independently as an adult was almost nil. She was “just mentioning it,” she assured us, but wanted us to be aware of this possibility. It wasn’t till a few days after the appointment that both j8earette and I began to realize that what had occurred was us being prepared for a syndrome with the range now being Noonan’s to CFC. We’ll just have to wait and see, and even with this new possibility nothing has changed.

So that’s where things stand in our topsie-turvie lives right now. We are very happy in general for the great strides we’ve experienced, thankful and appreciative of those who have been there for us, and mostly just overwhelmed with the joy and peace that our little warrior has brought to the family.

To my wife and the rock that keeps the health care industry honest, and provides the superb day to day care that j8earette jr depends on, I thank you from the bottom of my heart, and love you like no other. You have impressed me of late, which if not for our warrior, I would have thought impossible. It is now clear to me where a good portion of her character comes from.

To j8earette jr: Know that you are my Scotland and I am your William Wallace. ‘Braveheart’ however, is reserved for you and you alone.

Best,

-bear

07-21-2005, 11:03 AM	#72 (permalink)
j8ear Gentlemen Farmer Location: Middle of nowhere, Jersey	Hello fair followers of our saga. Today is j8earette jr’s due date. Today she is an adjusted age of one year. Over the course of the last few months she has progressed admirably, but still lags a little behind the curve even for her adjusted one year. She is not crawling or pulling herself to a stand. She is able to sit comfortably, but not yet sitting herself or even able to roll from back to front. Front to back is no problem, but only by leading with her left hand. Most recently she has developed an ability to rotate on her butt, at first clockwise only, but now she can spin in both directions. She likes to use her arms as wings and keeps them straight out to her side while making small movements with her legs out in front. It is an absolute riot to watch. She has two words in her vocabulary, that being dida and mamama. She has plenty of sounds, grunts and noisy outbursts of excitement and exasperation, but only uses dida when I walk into the room or to otherwise refer to me. This is definitely the highlight of my life so far. The missus doesn't buy it, but I'm certain that she also has mamama getting up to speed and consistently uses it to refer to her and her exclusively. She is a stout and solid 19 pounds 7 ounces currently and has been pretty stable here, having seen upwards of 20 pounds to as low as 19 even, for the last few months. One thing that has recently surprised me is how this little warrior is anything but delicate. She is amazingly strong and able to withstand the day to day bumps and knocks that an infant who falls over a lot, experiences. It's amazing really. She just shakes it off and goes about her business. One of the funniest things is her method of trying to sit. On her back, she tries the crunch method, i.e. she tries to bring her head straight up by flexing at the neck and abs. She doesn't get very far, except for a litte red in the face, and surely but slowly we're introducing her to the ‘roll onto her side, and use an arm to push herself up to a sit’ method. She's very close, I'm convinced and the experts assure us. She continues to regularly see a speech (feeding), occupational (her occupation is playing) and physical therapists. All report excellent progress, and utter amazement with her strength. She’s got 8-10 teeth poking through, and is definitely cutting more, as her agony would indicate. We’ve tried everything from Tylenol (tolerances too high, I think), to Orajel (causes her to vomit). The only thing that has worked so far is lemon slices. Although the novelty of this is wearing off, I think, so soon enough it’s going to be a matter of her strength just struggling through. While I hate to see her in pain, I am completely confident in her fortitude, as this is nothing to what she has already been through. Feeding continues to be our biggest challenge as she remains dependant on her PEG. She is not particularly fond of the spoon and even pedialyte via nipple is less about sucking and more about the nice cool temperature of the drink. She was evaluated a few days back, overnight, in a sleep study, and while the results are pending, the technician, and the missus, saw no indication of apnea or oxygen desaturations. It would seem that the overnight oxygen blow by, will be coming to an end, in the very near future. We have had great visits with GI and Cardiology recently. Her reflux is in check, and her formula and caloric intake are excellent. Her dietary needs have graduated to more reasonably priced recipes, and her vitamin needs are adequately addressed by a Flintstone's. I take great pride in my daily routine, using a pestle and mortar to grind up a pill and dissolve it in water so it can be injected via syringe into j8earette's PEG tube. Her PEG site is in excellent shape, and we’ve learned how little it really bothers her by observing how she pulls and tugs on it herself. Cardiology recently was one of the most encouraging visits we've had to date. Her cardiologist has traditionally been VERY cautious and sparring with any good news and always been very careful to make sure we are aware of how precarious our daughter's situation really is. Our most recent visit, however, which included a sedated echo, resulted in this very reserved and brilliant pediatric cardiac surgeon actually smiling, and while only being 'cautiously optimistic' was markedly changed from all previous appointments. I dare say he was actually encouraging. He continues to see abnormalities, and also believes that some cardiac hypertrophy (which I incorrectly labeled myopathy in a previous post), is definitely developing. This is the result of one side of heart having to work harder then the other. In essence the muscles on one side get stronger then the other. He’s not all that concerned about it, but wants us to be aware. He wants to continue monitoring her, but the next visit won’t be for a year. Our most troubling visit since my last update was with genetics. Previous visits with genetics indicated some possibility of a genetic disorder called Noonan’s Syndrome. The geneticist wasn’t convinced this was a fact, and had led us to believe that the range of genetic disorder possibilities was from none to Noonan’s Syndrome. This visit however, the subject of another disorder called CFC surfaces. After all the recent progress, we were unprepared for this, and honestly of the mind set that whatever they could throw at us wouldn’t matter in the least. No change in our approach, no change in our care, no change in anything, but when I asked why this was being mentioned, the geneticist revealed that the likely hood of an individual with CFC living independently as an adult was almost nil. She was “just mentioning it,” she assured us, but wanted us to be aware of this possibility. It wasn’t till a few days after the appointment that both j8earette and I began to realize that what had occurred was us being prepared for a syndrome with the range now being Noonan’s to CFC. We’ll just have to wait and see, and even with this new possibility nothing has changed. So that’s where things stand in our topsie-turvie lives right now. We are very happy in general for the great strides we’ve experienced, thankful and appreciative of those who have been there for us, and mostly just overwhelmed with the joy and peace that our little warrior has brought to the family. To my wife and the rock that keeps the health care industry honest, and provides the superb day to day care that j8earette jr depends on, I thank you from the bottom of my heart, and love you like no other. You have impressed me of late, which if not for our warrior, I would have thought impossible. It is now clear to me where a good portion of her character comes from. To j8earette jr: Know that you are my Scotland and I am your William Wallace. ‘Braveheart’ however, is reserved for you and you alone. Best, -bear __________________ It's alot easier to ask for forgiveness then it is to ask for permission.