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MAX'S JOURNAL
mcunnick |
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ONE OF THOSE DAYS
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Apr 09, 2010 11:39am (EST)
You all know Max has come a long way and he made tremendous progress lately. I am really proud of him, truly I am. So what I am going to tell you right now has nothing to do with Max himself or my pride in him.
It begins with a silly thought. We noticed Max likes to observe people, especially little ones. He has lately acted like getting bored with playing with Grandma or Mommy. So, I had a silly thought one day, "Hey, maybe we can bring him to a daycare for a couple of days a week, half day at a time". There happens to be a well-regarded daycare 3 minutes away from our house and Max's toy library that he goes to borrow set of toys once a month happens to be in the same building as the daycare. So, mommy called the place and made an appointment to do a site-visit.
It happens to be a lunch hour when Max and I walked in (YES, we WALKED in). A group of toddlers were sitting in a small table and eating lunch, something mundane like a peanut butter sandwich. Munch, munch, munch. Mommy casually asked the director, "Max still needs to be bottle fed, would it be a problem?". Mommy just did not realize that she would be answered with shocked faces and string of questions. He is not using a spoon? No solid? Does he drink the bottle by himself then? He did not learn to eat yet? No, No, No, No. My answers to those questions are No.
They were polite. They said they might be able to make accommodations. They also pointed out that he might be better off in infant room than in toddler room, although they don't have any spot available in infant room. So, they were professional and polite.
It is just their reactions to my simple question, reminding me that raising a preemie and what involves in it is something that nobody could understand or comprehend, unless they experience it themselves. They don't know how much I wish Max would chew up peanut butter sandwich like all the other kids and drink fruit juice out of a sippy cup. They don't know how much I am trying to help him to learn. They can casually say that your child is behind so should be with babies, not with other toddlers. They don't know how hard Max has been working to get where he is now.
When we came back from the daycare visit, I ground up a bit of avocado, banana, sweet pea, and apple sauce in a whole milk and put it in a bottle and fed Max on my lap. I guess, at least, I can say he is eating a lot better lunch than what those toddlers have in the daycare.
So, it was one of those days that my feet felt a bit heavier and my heart felt a bit blue. And it all began with my naive thought that Max might enjoy other kids company. Self brought mind injury I guess. I am so glad that you guys are out there. I would have not had anybody to turn to when I am having one of those days.
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Posted by mcunnick | Comments: (4) | Permalink
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OFF OXYGEN AND STEADY WALKING
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Apr 07, 2010 08:22pm (EST)
Max is off oxygen completely for four days now.
I have not been sleeping well just staring at his O2 Stat monitor during the night while he is in deep slip. He had a couple of O2 dips to 89 last night, but has been keeping his O2 Stat pretty well.
Max has also taken off with his walking. His little knees are covered with little bruises from his fall from wanting to walk everywhere, but he is doing really well.
Ah, we are heading off to Columbus Ohio next week to be at the BPD clinic at the Nationwide Childrens. It has been a year since he was discharged from NICU and we thought it might be a good idea to check his lung growth (especially now he is off oxygen) with the excellent team of doctors over there. I don't know how Max would handle 8 hr one way trip, now he is so active and anxious to play.
Wish us a good luck and I hope everybody enjoy the short spring that we have. It was really hot today here in Northern Eastern PA. I hope the summer is not coming too soon. It is strange that we had 6 inch snow a couple of weeks ago and all of sudden 80 degree weather.
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Posted by mcunnick | Comments: (3) | Permalink
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16 MONTH
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Mar 23, 2010 06:16pm (EST)
16 month adjusted.
19.5 month actual.
Max took 4 steps and walked toward grandma,
all by himself.
Good boy, Max.
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Posted by mcunnick | Comments: (2) | Permalink
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FOOD AVERSION
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Mar 05, 2010 08:36pm (EST)
"Food Aversion". It is a big word, isn't it?
We have had the difficulty transitioning Max from bottle feeding to solid food for sometime. His early intervention OT has been working with him for almost 8 months now and he had other OT and ST on and off on the very same issue.
If I reflect back, Max's reaction toward solid food has evolved somewhat although it just appears exactly the same on the surface, "I do not want to be spoon fed". Initially he would not open his mouth. For a while, he would open his mouth toward very selected variety of food. Then while he was in and out of the day care, his mouth was fuse shut. Then there was the period when I could distract him with toys and such and dump food in. He would make a big face but finish 1-2 ounce of pureed food any how. As he got older and smarter, that would not work either. Finally, beginning of this year, he found the joy of cheese puffs. He is happy to put that thing in his mouth any time and any amount. It appeared that his willingness to try different things slowly grew simultaneously. There were some glorious and memorable moment when Max would gulf up a rather spicy grilled pepper soup (see the picture in the previous posting) or when he bite into a fresh cut up apple. On my birthday, he spooned up custard cream out of my birthday cake and could not get enough of it.
However, he still refuges all the pureed food. There is no consistency in the type of food he likes. AND he clamps up toward spoon feeding 99% of time. So here we are again, seeking an expert advise. He had a evaluation from a feeding team at Geisinger, who suggested to let him explore more with highly flavorful table food. Then there was a evaluation from a ST at local rehabilition/Therapy center. Max was not feeling well and crying and crying from the start. He would not eat anything that I had to offer except cheese puffs. At the end of 30 min session, she put this big word on him, "Your son has this food aversion due to sensory issue". Our shoulders were a ton heavier after the session.
So what this food aversion anyway? Afraid of eating? Not enough of eating? Does not want to be spoon fed? Or is it simply that he is not ready and taking his time. The baby just labeled as "food aversion" tried and ate polenta with mushroom, spaghetti with tomato sauce, and tonight spaghetti with "Saldine, olive, and caper". He sucks on baby back ribs and beef jerky. He puts french fries and mac and cheese into his mouth no problem. That baby loves to eat butter and cream cheese off my hand. Yes He might spit out more than he swallows. Yes he does not eat consistently and not enough to make a complete transition to solid food. But does he really really abhor food?
I am confused. Can I just close my eyes and think that everything will be okay and he is taking his sweet time and he will eat up everything like a storm when he is ready? Do I really have to put Max through three feeding therapy sessions per week in a strange place with a stranger, hoping that it would somehow help him?
I really don't know.
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Posted by mcunnick | Comments: (2) | Permalink
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VENTING
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Mar 02, 2010 12:55pm (EST)
Finally, all those dr's appointments and therapy sessions got under my skin. Just juggling all of them together itself is tiring and I don't see the point for some of them. Both Max and I need a break from those appointments, I feel, but I don't see how we could.
Sorry for the grumpy posting. I just need to get it out of my system.
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Posted by mcunnick | Comments: (2) | Permalink
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FEBRUARY UPDATE: HAVING FUN
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Feb 20, 2010 10:18pm (EST)
Max is doing great. Since he is out of a daycare and taken care of by Auntie Leah, he is "sick-free, puke-free" happy baby. He lost close to 1.5 lb during the month of January while he was in the daycare and catching a cold back to back, and now he is gaining that weight back.
He is crawling, standing, cruising all over the place and we are hoping that he will be walking soon. He is exploring food and different taste lately. It is nowhere near to replace his bottle yet, but he chews and swallows cheese puffs (I know, it stains everything and makes our dining room a war zone) and puts spoonful of soups and pureed food into his mouth. He liked the corn potato soup and roasted red pepper soup. He also likes to lick at bread smeared with butter. The other day he tried custard cream filling for the first time and he was going town with it. We still have to try the custard again to see whether he just liked the newness of it or he really liked it, but we were all enjoying watching him so into food.
Last, but not least, he is off oxygen during the day. He wears his cannula only when he sleeps during the night. Auntie Leah has been so good to take picture of him everyday, documenting all the fun Max is having lately (Thanks Auntie Leah) and I am happy to share a couple of them with you all.
Cute with a gigantic spoon
100_6121
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Posted by mcunnick | Comments: (2) | Permalink
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ENOUGH IS ENOUGH: FINAL TAKE
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Jan 30, 2010 02:40pm (EST)
Sorry for not updating for a while. It was a whirlpool of sickness in the house, mostly me, not so much Max, for a while.
We decided to pull Max out of the specialized daycare. His Early Intervention therapist agrees that Max takes a huge setback in his solid food eating whenever he catches a cold from the daycare. It is very hard on Max's body whenever he comes down with cold, because all those post nasal drainage cause him to choke on his own mucous and throws up. It just gets so hard on everybody. One of Max's aunts will take care of him until the first week of March and my mom would be back to take care of him until the end of April. We will be looking for a caregiver meanwhile. I am very happy and relieved with the final decision that we made. I sort of knew that the daycare was too much for him but we did not have any other choice at that time, and I felt like I was putting our family through such ordeal just to keep my career alive.
Max is happy ever. His Early Intervention declared that we do not have to worry about anything in his gross/fine motor skill. He crawls with hands and knees and make a transition of crawling to sitting, standing to sitting vise versa very well. The only thing left for him is to walk, and he is cruising along furniture and walking well while holing onto just a finger of Mommy or daddy. We are not concerned. It has to be his idea and his own schedule.
So as soon as he recovers with his last cold, all our main focus would be to overcome his hyper gag and solid food eating. He loves to put biscuits and crackers into his mouth but always gags on the tiniest crumbs. He does not gag on pureed food but does not like to open his mouth for it. We will be seeing a enterogastrologist sometime in February and hopefully get some answers as to how to tackle these issues. Other than not making much progress in solid food eating, Max learned to feed himself with a bottle and sippy cup. He still likes to lay on my lab to get his bottle though.
We are happy with all the progress he has been making. I often gets a bit sad/happy at the same time that he is growing so fast to be a boy than a baby. It seems that we missed out a lot of sweetness of Max being a baby.
Finally, I solidified my mind not to try to have another baby. There was a complication a week after last D&C and I had to have multiple transfusion and emergency D&C to stop massive bleeding. The Ambulance trip to ER and subsequent hospitalization was not very pleasant, even considering how much exposure I have gotten to the general unkindness in general medical practice. I know my body can not take another pregnancy or miscarriage anytime and I don't want to put myself and my DH through the ordeal anymore.
Thanks for listening to my rambling. I will try to post recent pictures of Max next time.
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Posted by mcunnick | Comments: (3) | Permalink
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