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MORGAN GRACE - THE SWEET AND THE SOUR.

[RN, kristina - preemie mom & former ICU]

kristina - preemie mom & former ICU RN

March 2010

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"WALK" & TIME FOR TUBES

Mar 08, 2010 06:33am (EST)

The Sweet:

Morgan's preschool teacher said that Morgan is make some progress in class. She is cooperating better, and is starting to participate in activities a bit more. It is a step in the right direction in any case, baby steps are okay with me.

There is a little boy in her class that absolutely hates when they turn the light off for nap time. He repeatedly goes to the light switch and turns it back on. The teacher has finally taped the light switch to slow him down. Morgan has seen him flip the switch lots of times. Yesterday, she started flipping all the light switches in the house on. She has never touched them in the past. I had to laugh because now, no one can say she hasn't learned ANYTHING at school.

We are hearing tiny bits of appropriate speech from her, just here and there. A few days ago, she took the teacher's hand lead her to the classroom door and said, "Walk!" Of course, the teacher took her for a walk immediately. We always bend over backwards to reinforce the idea that if you use your words, you can get things you want. It is a simple, yet very important concept. Once she figures that out, she will be motivated to appropriately use her words by everything she wants.

My facebook support group, "Loving A Miracle", is growing, there are 36 members now.

My blended diet tutorial is coming along, but not quite finished. I am pleased with how it is turning out.

The Sour:

Morgan has seen the ENT twice. The first time he said that her ears didn't look bad enough to be causing her screaming.

He said she had some negative pressure in her ears, and the eardrums were pink, but not red, that maybe her eardrums are always pink. (normal is kind of clear, or translucent) I obviously can't see her eardrums, but I know my child, waking up screaming in pain, has always meant it was her ears.

Unfortunately, she does have gastritis again right now, so he has something else to blame it on. While gastritis is painful, I know what my daughter's symptoms of gastritis are, and they have never included waking up, screaming inconsolably, in obvious pain. With her gastritis, she is very hard to feed, gags and vomits randomly throughout the day, and wakes up after about one hour of sleep, cries, gags and throws up, then she goes back to sleep for the rest of the night. She never stays up all night like she has been doing, with her gastritis, not even when she had it so bad she was throwing up blood!! My experiences tell me it is her ears, but he had me doubting myself. So the ENT said he wanted to just watch and see if her ears got worse, before deciding to put tubes in her ears.

Now, I am not eager to place tubes in her ears, but I have had enough watching her scream in pain, and sitting up with her half the night, every night. Besides, I expect her to get lots of respiratory infections over the next few months and years, the odds of her getting more ear infections is pretty high in my opinion.

We went back to see him one week later and he said her ears were still, pink and now she has fluid in her left ear. Still he wanted to wait and check her again in ONE MONTH.

Really? He wanted me to let her go on like this for a MONTH. A few days (and very long nights) later, I called him back and said, you tell me what to do, she is miserable, and no one is getting any sleep. She ended up with another round of Zithromax and is scheduled for surgery to place tube in her ears this morning.

Please, God, let this help Morgan. The poor child deserves a break, and sleep, sleep would be nice. I seem to remember sleep, but is has been so long ago....YAWN...

Morgan has only had two ear infections in her life, but both of them required many, many rounds of antibiotics to clear up. The ENT said it may be because of Morgan's "dysmorphic features". Dysmorphic features, that medical speak for when something is not shaped normally. Morgan's head is slightly larger on the right than the left. That is probably due to the fact that her brain is larger on the right than the left, thanks to the loss of more brain tissue on the left than the right from her stroke. It is not really all that noticeable, unless you know to look for it. He says it is enough that it may have tweaked the tube that runs from her inner ears to her throat. If they can't drain well, it can cause these hard to treat ear infections. Hearing the words, "dysmorphic features" stung a bit. It isn't like I didn't know she had them, I just didn't like hearing it.

I am not really worried about the surgery. It is the waking up from sedation I am worried about. Both of my kids always wake up absolutely psychotic, arms and legs flying, screaming. It lasts for a good while. It is hard to watch, but even harder to hold on to them so they don't hurt themselves! Anybody else have this problem? I am thinking about asking the doctor to give her something to relax her so she will wake up calmer, but I am not at all sure they will do that. Wish me luck.

I better go, time to get her dressed for the hospital. I am going to let her wear a clean set of PJs, so she will be comfortable.

Posted by kristina - preemie mom & former ICU RN | Comments: (3) | Permalink

LOVING A MIRACLE & CALLING IN AN ENT

Feb 24, 2010 05:12am (EST)

The Sweet:

As some of you know, I have been befriending preemie and special needs mothers on facebook, for a while now. I think there are about 27 of them at this point. I started making it a point to introduce them to each other, and lately the suggestion was made to me, that I should start my own facebook group for them. Well, I did that last night. It is called, "Loving A Miracle - Special Parents Supporting Each Other".

I think it is so very important to for preemie, and special needs parents, to give, and receive support from each other. It feels really good to help facilitate that. I know how lonely and isolated I felt, when I didn't know any one with similar issues. I wanted to reach out to others who, I can only assume, feel much the same way I did. If you are on facebook, you are officially invited to join us, if you'd like.

Here is the link, if it doesn't work just copy, and paste it to your browser.

http://www.facebook.com/group.php?gid=325329864348&ref=mf

The Sour:

Morgan woke up from her nap SCREAMING in pain, AGAIN. Yesterday was day 4, of her 6th antibiotic, for this ear infection. The Pediatrician said since this is her first ear infection in a long time, and only her second one ever, that I should wait a bit longer to call in an ENT. Sorry, but I am done watching my child suffer like this. I am calling an ENT first thing this morning, and hoping I can get her in to see them quickly. Wish us luck. One way or the other, this has got to end.

Hope all is well with you.

Posted by kristina - preemie mom & former ICU RN | Comments: (4) | Permalink

IT'S BENIGN! & GASTRITIS?

Feb 23, 2010 11:26am (EST)

The sweet:

I got the results of my biopsy to rule out thyroid cancer. It was benign. Thank you God!

I will have to have the biopsy done again in about a year. If it still comes back benign then, I will have to have the biopsy done every other year from then on out. My husband said, he doesn't want to wait a whole year to recheck it. He thinks 6 months is a better idea. Easy for him to say, it isn't his throat they would be jabbing with a needle. A year sounds fine to me.

Like I said before, this thyroid issue is not going to go away. It will be a life long concern, but for now, I am relieved to be able to keep my embattled thyroid for a while longer.

I weighed Morgan at home this morning, and she weighed 31.5 pounds. Yea!

We are headed in the right direction.

The sour:

Morgan is currently on her 6th antibiotic for her ear infection. I am starting to wonder if it will ever end. I asked if I should just go on, and have her see an ENT, but was told not yet. This is the first ear infection she has had in a very long time. It has just lasted seemingly forever. She also has a new cold, mostly just sniffles so far, no cough.

She threw up once on Saturday night, it is the first time she has thrown up in a long time. She threw up again yesterday, once during the day, just seemingly out of the blue, then she woke up last night about an hour after going to sleep, crying in pain, and then threw up. I gave her Maalox and she calmed down quickly. That is the pattern we would see, when she had gastritis in the past, when she was on formula. I am not positive it is gastritis yet, but my level of suspicion is high. I am very bummed out, because I was hoping she would never get gastritis again, since she is off formula. To be fair, being on antibiotics for so long may be the cause. I also have increased the oil in her blends, from 3 teaspoons a day, to 4.5 teaspoons a day, in an attempt to help her gain back the weight she has lost, maybe the extra oil is the problem.

It is hard to express how upsetting it is to be dealing with these feeding issues again. I hate being the calorie police again, counting every calorie she eats, and being back to worrying about gastritis again. It is no fun, spending every day constantly thinking about how much she has eaten, and skipping outings because she doesn't eat well anywhere but home. I really had hoped we were past all that.

The whole cancer scare really stressed me out. I am having trouble shaking the nerves. Apparently, I don't diet well when I am stressed either. I gained a pound. Oops!

For today, I am going to just try to relax, a bit. (And not eat myself into a new pants size!)

Thanks for all the prayers and support, You all are the best.

If you comment on my blog, and I don't routinely comment on yours, leave me the name of your blog, maybe I just haven't been able to find it. I always intend to return the favor.

Posted by kristina - preemie mom & former ICU RN | Comments: (7) | Permalink

"HERE" & HOLY MOTHER, THAT HURT!!

Feb 21, 2010 06:39am (EST)

The sweet:

Morgan is up to 31 pounds, so still down one pound from January 8th, but headed in the right direction. She has been fine with the changes I made to her blends, to add in more calories, which is helping.

Her teacher & the teacher's assistant are being very helpful. They are trying very hard to help Morgan met her feeding goals at school. They still aren't quite making the goal, but getting a lot closer to it. I am having to play catch up feeding-wise, every night after school, not fun, but I am getting it done.

Last night, Morgan picked up her bottle, handed it to my husband and said, "Here."

Yea, for a little bit of appropriate speech!

My blended diet tutorial is coming along. I am not done yet, but I am getting there. I am looking forward to having Morgan's former speech therapist critique it for me.

My little group of preemie moms that I know on facebook, has grown to about 25 total. A few of them are mothers of special needs kids, but since most former micro preemies have special needs anyway, they definitely fit right in. It is great how supportive they are of each other. It has been suggested to me that I start my own facebook group for them. I love the idea. I am now considering names for the group. I want to include the special needs moms too, so I don't want to name it "Preemie" something. I was thinking of something like, "Special Mommy Matters", but was told I should not have the title be gender specific, because there are a lot of primary caregivers who are Dads these days. My husband came up with "Amazing Gains". Someone else said "Morgan's Grace", which I think might be a bit too shameless. I am asking for your suggestions. I want it to be something about the challenges, the triumphs, and the miracle of our kids. You can leave suggestions on the comments here, or email them to me at kristinablizzard@yahoo.com. I would appreciate your input.

The sour:

The principal at Morgan's school walked by Morgan's classroom, and twice in one day, heard "Signing Time" being played. She told the teacher that she can't have it on more than once a day. The teacher explained to her that we use it to help Morgan eat. She watches it while she eats. Without it, she is up and running around the room, instead of eating. The principal informed her she could not make those kinds of accommodations, since they are not listed in Morgan's IEP. (Feeding goals were not addressed in the IEP, a HUGE oversight on every one's part.

) This happened last week, before I had told the teacher how much weight Morgan has lost. So, when we got back to school, after our snow break, on Wednesday, the teacher told me, I needed to talk directly to the principal, and explain what was going on, so she would understand, and not try to interfere anymore.

The principal was very nice to me on the phone. She told me who I needed to contact to set up an sub-arch meeting, to make the needed changes to Morgan's IEP. After I got off the phone with her, she spoke to Morgan's teacher, and said, "I don't know what the big deal is. Why don't they just put in a feeding tube? It would be so much easier." The teacher told me that on Wednesday, as I was picking Morgan up from school, right after having had my biopsy to rule out thyroid cancer. I was a bit stressed out that day, and am so VERY GLAD the principal did not say that to me. I don't know what my response may have been, but it could have been ugly, considering my frame of mind that day. Her nerve, and apparent complete ignorance, just boggles my mind.

Speaking of my biopsy, WOW. It hurt A LOT more than I expected. Online, it said that they would numb the site with Novocaine, prior to the biopsy, so I thought the numbing injections would probably be the worst part. NOT! My doctor doesn't use Novocaine. She uses some cold spray instead, to numb the area, which by the way, DOES NOT WORK AT ALL!!!
The nodule she was trying to biopsy is under the muscle in the front of my neck. She said that is why it hurt so much, because she had to go through the muscle to get to it. She would find the nodule with the ultrasound, then place the biopsy needle in the nodule, using the ultrasound to guide her. She would then put down the ultrasound piece, twist and jab the needle up and down in that spot, about 15 times. This was repeated with about nine needles. She kept saying that she wasn't sure she was getting the spot she was after.

She told me not to tense up. Yeah right, much easier to do the first time, before I knew how bad it was going to hurt. She told me not to swallow. Okay, let me tell you, when someone tells you not to swallow, you suddenly need to swallow more than you ever have before. I didn't swallow, but boy, did I want to.

They told me to expect the results around Monday, which is tomorrow. The assistant told me to call her on Friday, she said she would call and check on the results, to see if they were in yet, and at least let me know if they would be ready on Monday. I called, and left her a message at 11 am. She never returned my call. She has always been so quick to return calls, this has me worried. From experience, I know that bad news gets delivered by the doctor, good news from the assistants. The fact that she did not call me back at all, makes me worry that the doctor was just not available to call me yesterday, that maybe the doctor was off yesterday. So in a nut shell, WAITING SUCKS.

The biopsy site is really bruised, sore and a bit swollen. I take a full aspirin a day, because of my clotting issues, and I am sure that made the bruising worse. I skipped one aspirin, but since the bruising is not nearly as problematic as say, a heart attack or stroke, I will gladly put up with the bruise. It looks like a big hickey, which I find very funny.

Wish me luck, say a prayer, cross your fingers....and thanks for reading my long winded post.

Posted by kristina - preemie mom & former ICU RN | Comments: (6) | Permalink

"HERE." & WAITING

Feb 21, 2010 05:17am (EST)

Posted by kristina - preemie mom & former ICU RN | Comments: (0) | Permalink

"I GO HOME" & FAMILIAR TERRITORY...

Feb 13, 2010 08:23pm (EST)

The sweet:

Morgan is back in school, after having missed some days due to her ear infection and resulting diaper dilemma. She is currently on her 5th antibiotic and we have hopes that this will finally clear it all up.

When I picked her up from school Friday, I said (and signed in sign language) to Morgan, "Hello. How are you? Are you ready to go home?" She smiled really big, ran to me, and said, "I go home! I go home!" Every little scrap of appropriate speech is soooo good to hear. It doesn't happen very often, but when it does, I get so happy.

She also picked up an ink pen in class, and said "pen." She is so funny, in that her skills are what I have heard called "splintered, or spiky". I mean that she can do things that other kids her age aren't usually doing, like the fact that she happens to know how to spell the word pen, and can read, and sign in sign language, way over 150 words, (I quit counting after 150.) and yet she can't point to things she wants, which is an 8 month old skill. I can only hope, and pray for the day that she figures out a way to rewire around her brain damage, and be able to really communicate. I believe that day will come, and hope it is soon.

The sour:

The last time Morgan was weighed by her First Steps dietitian was Jan 9th. Morgan, wearing nothing but a dry diaper, weighed 32 pounds. Friday when I took her to the doctor before school, she was weighed in her long sleeve shirt, blue jeans, socks and tennis shoes. She weighed only 30 pounds. I was shocked and alarmed. Accounting for the additional weight of the clothes, she has lost about 3 pounds in a little over a month.

Understand, that is 10% of her body weight, in just over a month.

That is NOT okay.

I knew she would need time to adjust to school, and eating there was going to be a challenge for her. I expected her to lose some weight at first. I just didn't dream it would be that much. At the beginning, I told myself not to obsess about it, and trust Morgan, that if given ample opportunities to eat, she would take what she needs. This has been the case at home, ever since she has been on the blended diet, and off all formula. Since the diet change, she has consistently had her best ever weight gains.

I took her on into school that morning, and told the teacher Morgan has lost a lot of weight, and we are going to have to do better getting her to eat at school. I thought she heard and understood me.

When I picked her up that afternoon, both the teacher and her assistant were very excited about how well Morgan ate that day. They were just beaming, and told me how happy they were that Morgan ate "5 whole crackers today." One of them said, "Yeah, she ate them like she was really hungry too." I was pleased. Morgan eats crackers at home all the time, but she hasn't been doing that at school, probably because of all the distractions etc. I walked away from them feeling relieved that Morgan ate well, only to get to the car, open the pack we use to transport her bottles of blended diet, and find that not one of her 3 bottles had been touched! No wonder she ate the crackers like she was hungry, she should have been starving! I can only assume they offered them to her, and she refused.

I think the thing about what happened that disturbs me the most, is the fact that they seem to have totally missed the big picture here. Ask yourself if a typical child ate only 5 crackers for the whole school day, would you be thinking to yourself that the child ate well? If they had said to me, "Gosh, she didn't take any of her bottles, but she did at least eat 5 crackers.", that would have been a much more reasonable accounting of her day.

The thing is, Morgan can not eat like a typical child. She needs to have her bottle. She needs to be in a reclining position to take it. She is slow at eating. She gets fatigued, and needs to take a break, and then come back to finish. She needs to have a calm, quite place to eat. She does not eat well away from home.

I know Morgan has been sick, and that contributed to this weight loss. I think her teacher is a very sweet lady, who is doing the best she knows how. I don't know EXACTLY what they are doing with her for feeding times. I have made it clear what she needs, and was told it should not be a problem. We have a parent teacher conference on Monday. When I leave there, we will all have a better understanding of what exactly is happening, and what we need to do to improve it.

See, they have her for 6 hours a day, 5 days a week. With any feeding routine she has, they need to be on board, or we can't make it work. She needs to finish 6 bottles a day. I feed her one bottle in the morning, before school. If they have her for 1/2 of day, she needs to be eating 1/2 of her food while with them. She has only been taking, at most, about one full bottle at school. There is no way she can finish 4 whole bottles between 5 - 9 pm.

I find myself in unwanted, but familiar territory. Once again, there is not enough hours in the day to feed her. It is like being back on formula again, minus the projectile vomiting. I am reduced to weighing her at home, and tracking her every calorie again. I so didn't want to be back here again.

I have reworked her recipes, so that I have bumped up the calories from 1200 to 1400 a day, while keeping the volume about the same. I am hoping that will help. She can not lose another 3 pounds, we will be right back to hearing "she needs a G tube", and I will be pulling my hair out.

Maybe they are doing something they don't know won't work. Maybe it will be something easy to fix, like they forgot what I told them, and think she can take her bottles sitting up. If you try that, she will take a small amount and then quit because it is too hard for her. Maybe they just aren't giving her enough time to eat. Whatever it is, hopefully Monday will clear it up.

Cancer scare update:
I have my biopsy scheduled for the Wednesday the 17th of this month. I will be glad to get it done and over with, but I am starting to wonder how much it is going to hurt.

Morgan taking a nap in a strange, but funny position

Posted by kristina - preemie mom & former ICU RN | Comments: (3) | Permalink

SPREADING THE WORD AND GERMS...GERMS...GO AWAY!!!

Feb 02, 2010 05:38am (EST)

The sweet:

Morgan took 4 days to decide that preschool it a fun place to be. She now goes into school with a smile on her face, no tears and no throwing up. She is eating reasonably well there too. That is a relief! She is even doing well taking her nap at school. I am starting to wonder what I was so worried about.

We did finally have Morgans Birthday party. It was just a few family members. I was afraid too many people would over stimulate her. I got her an ice cream cake, because she has been known to eat very small bites of ice cream. For the first time ever, Morgan happily ate a few bites of her own birthday cake. It made me cry happy tears. It was a good day.

I have been working on my blended diet mission. I have talked to a couple of doctors, offered both my opinion and my help if they wanted to know more about it. They seemed interested at least.

I have been working with a few mothers who have kids who have been G tube fed formula. Two of them have started their kids on blended diet already. So far so good. Both kids seem to be tolerating the changes well. One of them has been on blended diet long enough to have his weight checked, and he has gained 6 ounces, which is great since he has always had a hard time gaining.

I know how much switching to the blended diet has changed our lives. We no longer have to clean up after the endless fountain of unpredictable projectile vomiting. We don't have to count every calorie Morgan eats. I don't have to weigh her anymore, and worry constantly. She seems so much happier. She looks so much better. She hasn't had anymore GI bleeds or gastritis. It just feels right to be feeding her real food. I wish I had known about this sooner. I hate to even think where we would be today without the blended diet.

I know there are lots of kids out there just like Morgan. They are being force fed formula that is making them sick. The parents are just like I was. They don't know what is wrong, or what in the world to do to help. They are just doing what they are told to do. I am happy if I can help even one child escape that misery.

Yes, I know lots of kids do well on formula. Yes, I know some kids need specialized formulas, but I also know that doctors and dietitians are failing lots of kids, just like Morgan, because they don't know about blended diet, or aren't telling the parents.

I want to take out a billboard that says, "If your child is on formula and has GI issues, formula may be the cause!!!" I can't tell you how many times I ask and was told, formula couldn't be the problem.

I thank God I know better now, and for the opportunity to hopefully help others.

Speaking of helping others, I have been making it a point to befriend other preemie moms on facebook. There are about 15 of them now. I have introduced each of them to the others. It has been so nice to be able to connect with them, offer them support and to see them go on to support each other. If anyone is interested in joining us, I can be found on facebook under Kristina Smith Blizzard.

The sour:

Morgan and I are both sick. Morgan has a chest cold. She is on her third round of antibiotics for her ear infection. I thought it was the antibiotics that were causing her unbelievably messy diaper situation. (Thanks to unfortunate diaper failures, we are both on our second full set of clothes for the day, and it is not even 1pm yet!) but I believe she has a stomach virus, because now, I have it too.

I guess we can pretty much expect her to be sick for the rest of the school year, since she has never been around many other kids, she doesn't have immunity to anything. She seems to be tolerating being sick pretty well, so I am not overly worried. We will get through it.

I am doing okay in regards to my cancer scare. I am not obsessing about it, just like I promised, but it is hard not to think about it some. I wish we could just go on and do the biopsy right now, and just get it over with. February 17th just seems so far away. I don't even want to know how long the pathology will take to come back. It could be weeks.

Sometimes being a former nurse makes things harder. I KNOW that a mass with "ill defined" borders is not a good sign. Is it too much to hope for that it will just be gone when she goes to biopsy it? Maybe it will just disappear on its own? Okay, you are right, it would be nice, but very unlikely. I can dream can't I?

Cross your fingers, say a prayer or both.

Thanks for being there for me.

At long last a few pictures!!

Morgan's 3rd birthday

Morgan is ready with a fork and spoon!

Morgan tries her first bite of birthday cake

Posted by kristina - preemie mom & former ICU RN | Comments: (6) | Permalink

PRESCHOOL UPDATE AND MY STUPID AUTOIMMUNE ISSUES...

Jan 25, 2010 08:06pm (EST)

The sweet-

Morgan had her 5th day of preschool today. She has adjusted quite well, and is doing better, faster than I would have imagined. She did figure out the pattern that school = mommy leaves, on day two. She cried a bit each morning for two days, then decided on the 4th day, that preschool is okay, and has gone in happily for the past two school days. Yea!!! She is handling the schedule well. She is even eating fairly well, which is a great relief. She won't eat in the lunchroom, but that does not surprise me at all. I knew it would be too much stimulation for her to concentrate on eating. They have worked in enough other eating opportunities for her, so it works out in the end. It is hard to believe that in September we had her scheduled for a G tube insertion, largely because we didn't dream she could go to school, and have enough time to eat each day. Back then, she was on formula, with horrible GI issues and required 6 - 8 hours a day to just eat! Thank God we put her on the blended diet, and put an end to all that!

)

The sour -

I went to see my endocrinologist today. My blood work came back perfectly. My cholesterol is beautiful. My blood sugars are fine, normal in fact, despite my diabetes, thanks to my diet, and recent weight loss. Just when I was thinking to myself, this is too good to be true, she checks my thyroid gland, and says, "Uh oh." (Never something you want to hear your doctor say.)

We already knew I have had a cyst in my thyroid gland for about 2 years, caused by one of my lovely autoimmune disorders. The original cyst is still there, but today she felt something new, and did an ultrasound to check it out. Turns out, I have a new "ill defined" nodule on my thyroid, which appears to have some calcification associated with it. Unfortunately, I need to have a biopsy done to rule out cancer. Lovely. Way to ruin my day, doc. She scheduled the biopsy for Feb 17th.

So...how freaked out am I? Not too terribly. I guess, the worse case scenario would be bad, that it is cancer, and that it has already spread, but I am hoping that is unlikely, since we did a previous ultrasound about 2 years ago, which aside from the cyst, was fairly unremarkable. If it is cancer, and confined to the thyroid, well, at least you can live without a thyroid gland. You just have to take hormone replacement for the rest of your life. Apparently, thanks to an abnormal antibody I have against my poor thyroid, it is just a matter of time, before my struggling thyroid poops out anyway. So, I expect to have to take thyroid meds sometime over the next few years anyway.

I am sure it is going to be fine. I am NOT going to obsess about this. I am just going to believe it is fine, until I know otherwise.

If it turns out it is benign, we will have to keep a close watch on it from here on out, so this issue is going to be around for the foreseeable future, and I just need to accept that, and keep moving. Cross your fingers, and/or say a prayer, if you are so inclined. Thanks!

Posted by kristina - preemie mom & former ICU RN | Comments: (4) | Permalink

FIRST DAY AT PRESCHOOL...AND MY NEW MISSION.

Jan 19, 2010 10:34pm (EST)

Morgan did very well on her first day of preschool. The teacher had a few questions for me when I got there, so Morgan had a few minutes to look around the room before I left. She was happily playing with another student, throwing a ball back and forth when I left her.

I left and with my very first bit of free time in over three years, I went shopping, and had a nice steak for lunch, all by myself. It was nice to have a bit of time alone, no one to look after or have to entertain. My diet suffered a little today though, because yes I had dessert.

When I went back to pick her up she was happily playing in the gym with about 3 other classes. She was running and falling down a lot. The PT in the school was concerned about it. I am not particularly worried. Morgan is just not used to wearing shoes all that often, and she was excited by all the kids. She has never seen so many kids at once. She looked elated. I noticed she was wearing the clothes she came in, and was both amazed and relieved to hear she did not throw up, and didn't cry but a little bit once, when she was made to finish a task. The teacher said she "had the best first day ever"! Oh, Thank you God.

I am hoping she stays thrilled to be there, and we don't start the crying till she throws up thing again. We will have to see what happens when she figures out the pattern that school = mommy leaves, but so far so good!!

With Morgan in school, I suddenly have more time on my hands. When I asked myself what I would most like to do with my first bit of free time in over three years, the answer was, I want to advocate for the blended diet. I have become quite the believer, and as a retired nurse, feeding people with G tubes real food instead of artificial formula for the rest of their lives, just makes more sense to me. I haven't decided exactly how I want to go about this new mission yet. I have friends on facebook that I have helped out with recipes, and there are a few families here locally, that are interested too.

My daughter's former speech therapist has said I should start a local monthly support group for those interested in blended diet. Someone else said, I should start my own web site, if for no other reason, than I could refer people to it, and stop spending so much time repeating the same story over and over.

(Well, at least it is a good story, and one I love to tell.)

I was thinking I would start by putting together a small, kind of "here's the basics" tutorial. I have several local therapist who would be interested in sharing this information with their clients, and my daughters pediatrician has said he would like to hear more about it too. My daughters GI doctor, said he would like to know more about how I am doing the blended diet orally for Morgan. No one who knows my daughter, can deny how much it has helped her. She quit projectile vomiting 3-6 times a day, stopped having chronic gastritis, and GI bleeds. Her aversion to the bottle went away. She eats independently now. She is starting to eat some solid foods, happily, comfortably. The changes in her are a pretty convincing argument for trying the blended diet.

There is already a wonderful group on yahoo, the Blenderized Diet Group. I am not looking to reinvent the wheel here. They do a fine job, and gave me the push I needed to try it in the first place. I just want to add to the voices calling for blended diet. The medical community is way behind the curve here. Most people with G tubes don't know they can even have real food. Some have even been told by their doctors that they can't do it because it is sure to clog their tubes or other misinformed, inaccurate information.

Anyway, like I said, I am not sure how I will go about this yet, but it seems like a worthwhile endeavor. If even one person is helped half as much as my daughter has been, any effort on my part will be worth it.

Posted by kristina - preemie mom & former ICU RN | Comments: (5) | Permalink

LAST MINUTE CANCELLATION...AND MY SHAKEN TRUST.

Jan 18, 2010 06:02am (EST)

We were totally ready for Morgan's birthday party, then 15 minutes before everyone was supposed to arrive, Morgan wakes up from her nap. She suddenly has a 102.3 temperature, and starts vomiting. Lovely timing huh?

I called everyone, and told them to turn around, and that we would just reschedule later, when she is not sick. At least her cake is an ice cream cake, so I think it will be fine stored in the freezer to serve later.

Poor kid is still on her second round of antibiotics, for an ear infection. I felt sure this was from a stomach virus, and not her ear infection. My theory proved correct later that night, when my son woke up, and did his best to make it to the bathroom. Bless his heart, despite his best effort, the mess he made was amazingly huge, and very gross, even to me, the former ICU nurse, and thanks to Morgan, a very seasoned puke cleaning up expert.

I will spare you the details, but I will admit I stood there for a minute in disbelief, and briefly thought about calling in a biohazard cleanup crew! It was more than I wanted to take on myself, especially in the middle of the night.

I get the mess all cleaned up, and disinfect the whole room, walls base boards, floor, trash can, weight scale and toilet. (He didn't miss much, let's put it that way.) Then, I walk into the laundry room, to put away the pile of newly made dirty laundry, only to find that the washing machine has shaken my whole box of laundry soap powder off the top of the machine, and onto the floor. It was spilled everywhere. It was certainly not something I wanted to see at that point. I just shook my head, and left it for the morning.

So, all in all, a good day, don't you think?

I kept my sense of humor, and got through it.

I personally haven't thrown up yet, but have felt like I might all day. Maybe it is a germ I have had before, and I will be spared the fever and other unpleasant effects.

Since Morgan has no concept of what a birthday party is all about, or that it was supposed to be, in fact, her party, she wasn't disappointed. So, at least there is that, one not disappointed birthday girl.

Morgan is supposed to start preschool on Tuesday. I hope she is all better by then. I have all kinds of mixed emotions about Tuesday. I am glad Morgan's world will open up a little more. I am hopeful the new teacher will have good advice for things we can try, to help Morgan start to use her large vocabulary for real communication. I have met with her, and she seems nice.

I am, on the other hand, acutely aware of how vulnerable Morgan is. Her brother, Logan is developmentally delayed too, but not nearly as much as Morgan. He was verbal before he started preschool. He could come home and tell me things, like if someone was mean to him. Morgan literally has no such defense. A weakness like that tends to bring out both the best, and the worst in people. People can be so unkind, and even evil at times. It scares me to death for her.

The background story to this fear, stems from a couple of things that have happened to Logan at school. When he was in the 4 year old program, his teacher, who is well respected, and has been teaching there for about 20 years, told Logan that if he got pee on the floor one more time, she was going to "make him lick it up!" I kid you not. I am sure she was just having a bad day, and probably would never actually do such a thing, but what a horrible thing to say to my son! We just so happened to have a IEP meeting planned for the next school day. I made sure to relay what Logan told me during the meeting, in front of the accused teacher, all of Logan's therapists, and the school counselor. She, of course, denied it, and said she would look into it. The official story I was later told, was that some other kid had said that to Logan, not the teacher. Really, like my four year old confused his teacher with another kid? Logan stuck to his version of events, never wavered, and was certain of who said it. When he repeated it to me, he mimicked the same tone she used, a very adult, and condescending tone, one I don't think you usually hear coming from a 4 year old.

The other event was at the end of the school year last year on the bus. Despite there being a bus monitor on the bus, my son was asked by another student to unzip his pants and show the other kid his "business". Logan complied. Apparently, this happened every day for three days. On the last day, Logan had trouble zipping his pants back up in time for his stop. When the monitor went to see what was taking him so long, she found Logan still trying to zip up, lots of questions followed. Apparently the other kid admitted to asking Logan to do it, and admitted that it was his idea. This other kid was also a 4 year old, whose older brother had taught him some "take off your clothes song". I don't even want to know what is going on in that kid's house, but I alerted everyone I could think of, because I think there is a good possibility that boy is being abused at home. I was shocked, and very upset that Logan would so easily comply to such a request, and that he didn't tell me about it once he got home. Yes, we had the "who is allowed to see your body", and your "clothes stay on at all times" talk before, and many times after this event. Logan had no understanding of the sexual nature of this request but, the other boy apparently does, according to the school counselor.

Can you see how these events might shake my trust in the ability of a school to protect my very pretty little 3 year old girl, who just happens to have a communication disorder? And why I flatly said, "Absolutely not." when asked if Morgan would be riding the bus to and from school?

I am going to try very hard to focus on the positive things, and put my dark, ugly fear away. I have to trust the teacher, and her assistant, to take good care of Morgan, and God to watch over her, when I can't, something I find very hard to do.

Thanks for taking the time to read my post.

Posted by kristina - preemie mom & former ICU RN | Comments: (4) | Permalink

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