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WOW! I have to tell you that Jeff and I have been astounded and amazed by the response to my last post. Thank you all so much for your encouragement, prayers, and support. It seems like the posts that I write “just for me” (in other words, I write them because I need to get the words out), seem to garner the largest responses.
Since I hardly mentioned little Noah last time, let me go ahead and bring everyone up to date. The Formula Follies are continuing at our house. He’s getting Neocate (elemental formula), Polycose (carbohydrates), and MCT Oil (liquid medium-chain triglyceride oil). The first two get mixed together and go in his pump, but the MCT oil has to be fed directly into his tube in a couple of doses per day. Doesn’t sound too hard, does it? Well, that MCT oil is a real bear to work with. It can very quickly interact with certain plastics. It doesn’t seem to affect his tubes or feeding bags, but we can’t find a syringe that we can easily use with it. First we tried just drawing it up in a plastic syringe to put in his tube. Before we could completely squirt it out, the MCT oil interacted with the little gasket thingy in the syringe so that the gasket stuck to the syringe. We couldn’t push the oil out! At first I thought that his feeding tube was blocked or damaged, but it was just the syringe. The GI nurse suggested mixing a little formula with the oil, but that is difficult and isn’t really any easier on the syringes. Today I tried drawing up some olive oil in the syringe then pushing it out, thinking this would sort of coat all of the parts. It did seem to work a bit better. We will have to see if it keeps working. The oil also dissolves the measurement markings on the syringes, so I think I will try some clear nail polish on the outsides. Anyone out there have any experience and suggestions?
On the developmental front, I have to say Noah seems to be doing . . . . drum roll please . . . BETTER!! He has three therapists that each come to the house once a week and work him very, very hard. Some of the main goals are that he would learn to change positions (right now he sits if we put him in a sit, but can’t get to a sit, roll over, etc.), learn to move (crawl, scoot, whatever), and learn to really play with toys. Right now he enjoys small rattle types of toys. My friend Lisa G. sent me a giant box full of small baby toys when I was pregnant, and these have been his daily joy from the time he could hold them. He is going to be a year old on Friday (!!!!) and his therapists would like to see him learning to use more advanced, interactive toys where he has to manipulate pieces, etc.
Noah’s toy skills haven’t improved much, but we are hoping that his birthday presents will help in that regard. He is really starting to shine in the area of moving around. He isn’t crawling yet, but if he wants something badly enough he will now sort of lunge/reach/scoot to get it while sitting. It takes him a while, but he can move several inches! He is also learning to turn around while sitting and is starting to lunge at my lap or a sibling’s lap and sort of climb/fall into it pretty effectively. It is so great to see him being more active.
Today we were in the grocery store and we passed a display of assorted balls. It was the sort of display where the balls are held in place with elastic cords. When I passed the balls Noah nearly threw himself over my shoulder in a frantic attempt to get to them. My mom was with me and told me she would buy him one, so I took Noah to the display. The little stinker batted the balls a few times then reached right in and took one out! It was nearly as big as he is but he carried it the rest of the way through the store. His brothers were deeply impressed that he chose a pirate ball LOL. His pt and ot told us a few weeks ago that he really needs a ball pit to play in and do certain therapy activities in. (My other dc were all wishing they had therapists like that when they were tiny!) Thanks to the Noah benefit fund, we were able to order him one which he just loves. This afternoon he sat in there with his zillions of little balls and one big ball and had a great time. Of course, we are NEVER short on “volunteers” when we need someone to go in the ball pit with Noah and keep an eye on him.
Now that Noah is getting closer to being mobile, we need to get really creative. He is attached to his pump 24 hours a day, and if he were to crawl away from it, it would breakaway or even pull out his tube. It is in a little backpack but is far too heavy for him to wear. His therapists and the therapists at the hospital have never known a child on 24 hour continuous feeds who was mobile. Leave it to Noah to break the mold again! The best solution the pt can come up with is to get one of those play yards that are made of panels and sit right on the floor with no bottom. We need to configure it so that he never goes farther than his tube will reach. We can hang the pump from his I.V. pole but I do worry that he could pull the pole over, so we will just need to put the pump at the edge of his play yard. I am thinking it might be a good idea to start putting him in there now so he is used to it and doesn’t suddenly feel confined.
Can anyone suggest a good brand/good place to buy? My wonderful cousin Heather suggested we look in a pet store for a good price but we live in Smallville USA so our options are limited. We get to Babies R Us, Target, Sam’s, and Petsmart every few weeks or so, or we could order from Amazon or something. I want something easy to configure, easy to fold (a necessity since I would want to take it down when he is sleeping), and very sturdy as he will probably want to start pulling up on it.
In another “big boy” milestone, we are getting ready to move Noah into a crib. Since he is pretty small and can’t roll, he has been in a bassinet at our bedside all of his life. He is starting to reach over his body, grab the edge of the bassinet, and pull HARD. He probably isn’t far from being able to flip out of the bassinet. He needs to be in our room since he won’t usually cry if he vomits or has a problem (plus we love to watch him sleep and scoot him into bed if he wants to nurse), but we have very little space in our bedroom. We went to Babies R Us a few days ago and found this tiny little crib! It is so cute – like a real wooden crib but maybe half size. His therapists said a crib with rails would be better than his pack and play since he could pull on the rails for exercise, so this is perfect. They even sold tiny little crib bedding sets with bumper pads and all. So cute! Jeff picked out a little jungle bedding set for it. I’m not personally a huge fan of alligators on crib blankets LOL but Daddy thought it was perfect and insisted that Noah actually chose it. How could I resist THAT line?? I need Jeff to dismantle the bassinet and get it up in the attic this weekend then we will make the big switch. I’ll try to post a photo of him in his big boy crib.
He does need prayers (I’ll take advice) about the pump in the crib. Just like with the play yard, if he moves too far in his crib he could pull the tube out or apart. If he gets rolling around, I am concerned he could get really tangled up or hurt. I have heard of a tucker sling (? Is that the right name?) that immobilizes a baby in its crib, but his pt really thinks he should be able to roll and move and play in there. We will have to see how it goes, I guess.
We meet with the peds surgeon on Monday. I have been saying all along that it was the 8th of August, but I was mistaken. When we get home we should have a definite answer on the j-tube/gj-tube situation.
Time for an official thankful list, then I am off to make dinner.
1. MAIL!! I love it now as much as I did when I was a little girl. My children have each received lovely packages from my friend Lisa B. over the past several days and are really enjoying her very thoughtful gifts. Another blog reader sent Noah a taggie blanket with his name on it. He loves it and is trying to play peek-a-boo with it. She also sent the dc a bunch of fun, colorful school supplies and some Snickers bars for Jeff. I also got a card from my friend Monique with a lovely note, devotional, and some money for film developing! We have received several other lovely notes and even checks for Noah's expenses lately, all of which are so incredibly appreciated. It still stuns us to see how God seems to have taken an “impossible” financial situation and just opened the gates of heaven to bless us through the generous gifts of others.
2. Headsprout phonics. I know, this is only something a homeschool mom would be thankful for, but this has been one of the happiest parts of our days lately. I have a remedial older reader who has struggled through every phonics program we’ve tried. He gets through the lessons, but struggles to apply them. At the suggestion of a friend, we looked at www.headsprout.com and were impressed enough to try it. He loves it and is going through it at lightning speed – several lessons per day by his own motivation. The program is really “cheat proof” in that he can’t figure out a workaround or get away with guessing (I don’t mean he would actually cheat) and it adjusts and adapts to his strengths and weaknesses. It is amazing and he is applying what he is learning. I was very happily taking two of the younger children through another phonics program that was working well and that we enjoyed, but Jeff asked me to sign them up for Headsprout as well. Extra subscriptions are half price and this allows three children to all be doing phonics even if I am busy with Noah or at a doctor’s office. They will all do it for as long as I will let them. CAUTION: There are some “aliens” in the lessons and books. They aren’t dark or scary at all, and they don’t bother us, but I wouldn’t want to recommend this without mentioning it. My dc think they are funny and know they are pretend.
3. I can honestly say that I am thankful for everything including the kitchen sink! Right before Noah was born we had a flood in our kitchen that did a lot of damage to the floors and created the need for a major kitchen remodel. Even though insurance is paying for it (different company – they even reimbursed me for each load of towels I had to wash!!!), I didn’t want to tackle the job pregnant or with a brand new baby. Then Noah got sick and we couldn’t find a good time. We finally decided that there would never be a good time so we took the plunge and called the contractor. They should be starting early next week and I am both excited and terrified. The repairs are really major, so being kitchen-free is overwhelming. On the other hand, our kitchen is older than I am (don’t ask!) and ultra dated (ugly? hideous? yucky?) and I am having a blast picking out tasteful flooring, fixtures, etc. that I couldn’t have paid for on my own.
4. Slobbery baby kisses. Noah is the undisputed King of Slobber and has been very generous with his kisses lately. Is there anything better in the whole world? I don’t think so!
5. Goofy baby grins. Noah is an exceptionally beautiful baby, but he has developed the most insanely goofy smile lately. His two top teeth have a gap between them which makes him look like a bunny rabbit if he smiles. When he wants to really turn on the charm, he crinkles up his eyes, wrinkles up his nose, and flashes those teeth. It is SO funny and it stops in our tracks every time. He has a similarly impressive pout that also uses the crinkly eyes, wrinkled nose, and teeth with a tragic twist. Yep, it works pretty well!
6. Noah’s therapists. Noah’s pt, ot, and ei are just wonderful. They work Noah very hard and he doesn’t always appreciate it (think Ultra Pout), but their suggestions are right on track and there is no doubt that Noah is benefiting from their efforts.
7. Our little town is getting a Starbucks right around the corner from my house and it is almost finished!! They put the sign up the other day. I have hoarded a couple of the Starbucks cards I have been given and am planning to take each dc and dh there individually for little one on one dates.
8. Noah’s upcoming birthday. Maybe I will write his birth story and post it on his birthday. For now, suffice it to say that he and I each, for different reasons, very nearly didn’t survive his birth. It is a special miracle day in so many ways, and I am overflowing with gratitude that we are both here.
9. Air conditioning. It has been pretty hot here in SC lately, and I am so thankful that I don’t live in the days of heavy dresses and no A.C. Our family does Colonial era re-enacting (at least we did before Noah got sick – maybe we will again next year) and I can testify that those clothes are HOT. I’ll take my comfy couch, A.C., ceiling fan, and a glass of iced tea over a log cabin any day!
10. Doggy foster care. Lots of you “know” our puppy Edison from his naming contest. He is an Australian Shepherd with a dash of lab and is about 9 months old. He is a great, smart, adorable guy but we haven’t been able to care for him properly lately. When Noah is in the hospital, Edison has to be kenneled. We just hadn’t had a consistent enough schedule to give this fella what he needs! We came to the conclusion that we would have to find our great dog a new home for his own sake, but the dc were devastated. One in particular just really fell apart. In an effort to make him feel better (OK, an effort to stop the ear-splitting sobs) I told him I would try to find someone who would just take Edison for several months to a year or until things settled down enough for us to have him back. I never really expected to find someone who would take him then give him back, but God was bigger than my doubts! A lovely couple who has fostered rescue dogs in the past offered to foster Edison as long as we needed. He has been there almost two weeks and seems to be thriving. This is one of those “little things” that was a big deal and big blessing to our family, especially our children. It is a precious thing when their faith is strengthened in ways that are so meaningful to them!
Love,
Kate
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