Update on Andrew
Jan 98
Andrew started school this month. He attends the Monday and Wednesday afternoon sessions, from 1pm-3pm. Oh, okay it's not really school it's a toddler class. But no parents allowed! It is held at the early intervention center (EIC). I stayed in the class with him the first day. Then the second day I stayed in the building the two hours, but from the third class on, I have been leaving the building and going out shopping and even getting some lunch! He has been doing great, he has never had a problem with staying there alone. After all, when else does he get to play with kids his own age?? He could have been taken to school by the school van, but I didn't feel comfortable doing this to him, after all he is only 26 months. Plus I want to take him in (for now) so I can check the toys that they will be using for any latex. Sometime in the spring, he will start going to school by van, in hopes of getting him use to it by Oct/Nov 98 when he starts pre-school at our local school.
The EIC let us borrow a different small metal front walker for Andrew to use at home. This was per my request, because the team at Children's didn't think Andrew needed one. I have to say that I was hoping he wouldn't need it too but, after I saw how well he walked with it I knew deep down in my heart it was for the best! He can even turn corners with the walker (something that was hard to do with a push toy) and it has really given him the independence that he needed.
We took Andrew in for his Mylo clinic check up and he had an IVP done. Dr Bauer said it was to early to check if the reflux was gone because there was still some swelling. We have another appt in March for a RNC. Also, got his braces checked, the front plate was cutting into the top of his left foot, thank goodness it got fixed before it developed into a pressure sore .
He can now push him self forward in his toy car!! He has been going backwards in it for months and is now very proud of him self with this new thing!! <grin>
Feb 98
I am happy to report: We have been asked by the March of Dimes to be the Ambassador family for our area! We will be having the first WalkAmerica kick off party March 18th. I am hoping that we can help get the word out about SB and the latex issue. The first article to be written could be either this month or next by our local news paper.
March 98
This month I started taking Andrew to a new in-door pool. It's at a state school, for the mentally disabled. Becky, a mom from the EIC did some research and found this place, thank you Becky!! This pool is so great because the pool floor can be raised to the height we need for the kids. Becky's daughter Katie and Andrew will benefit from this because it is great exercise. We have been enjoying our time there. Andrew enjoys the warm water he's probably thinking.......hey Mom where's my soap and ducky. <Grin>
Andrew had Clinic visit this month, he no longer has reflux into his kidney and can stop taking his Furadantin. But I'm not really happy w/ Ortho this time. He didn't spend much time w/ Andrew and he told us he thought maybe at school age Andrew would do better w/ a pair of HKAFO's (braces that strap at the waist, hinge at the knee, and go from the knee down like the afo part). WE don't agree w/ him. I might go for a second opinion. But for now I will wait and see...........
The same day as above I told my pregnancy and birth story at the first March of Dimes kick off party at the Milford Marriott in Milford Ma. See pictures and read the article here.
April 98
April 15th--GOOD NEWS: Well, we had a Mylo apt and I went in there ready for a fight but didn't have too! I took along Andrew's (borrowed) walker, he wanted to walk around so of course I let him. When I turned around to go back to our room to wait for the doctors, they were all behind us watching him walk. Andrew walked so well for them and many of them had their mouths open and almost hitting the floor! I looked at the Ortho doctor and said "oh he was getting bored waiting for you." So, guess what? We talked to him about the last apt (remember I wasn't happy of the idea of Andrew in HKAFO's?) and he wanted to know how long Andrew had been walking with the walker. Boy did he change his tune, after he saw Andrew walking w/ the walker. But he did say that if I wanted him to use a walker that he recommends a rear one then the front one. I told him I was NOT happy w/ him on the last apt, because he didn't answer my question to why Andrew's left foot was turning in only with the brace on, and that it was only recent that he was doing this. He said it was not a tethered cord, but the not so good news is that the bone from his knee to his ankle is growing crooked and that, that was the real reason his foot was turning in. He sent us for a fitting for new braces, they are still AFO's but they will not have the removable front plate. He did question if Andrew might do better with SMO's (braces that only go up to his ankles) but my husband and I thought AFO's were better for him at this time, maybe the next pair can be the SMO's. The new brace on the left foot will be aligned different to help straighten his leg as he grows, but if needed, surgery could be done later in the future to correct this . We will be picking them up in two weeks and will let you know how he is doing after that.
We picked up Andrew's new braces, they are still AFO's and we are very happy with them. They are made lighter, w/ no lining and have a trim fit. They fit better in his sneakers too. The best part is that it does keep his foot straight when walking, so our goal was reached w/ this pair. Now we will be ordering a rear walker soon. I can't wait.
April 26th- The March of Dimes walk went well, we (Pat and I) raised $506.00 and it was a beautiful day! Andrew loved it! If you would like to see pictures and read the news article on Andrew click here.
Andrew has been calling me "mum" --all the time when he wants my attention, sometimes I pretend not to hear him (because I love to hear him say it) but everyone tells me I'll soon be sick of hearing it, but I don't think so! When he wants me he will come up to me and tap me on the arm or leg and say "mum" until I answer him. I love it, he doesn't have many words so we think it's so cute!
May 98
May 11th: I have the best news to share with you!!!!!!!!!!!!!!!!!
Andrew took his very first steps ALONE today!! He did it for a chocolate cookie! I missed it though, because I was laying down (I've been sick w/ a bad cold), but Pat run up to wake me and told me what I have been waiting to hear for the longest time!!! This is the best (belated) Mother's Day gift ever!!!!! He took 3 steps then fell, then got up, took 4 more steps fell, then he clapped for himself and was so proud!! He's been taking 2-4 steps each time then falling and can stand up from the crawling position to start over, it's a start. I cried I was so happy!! HE'S ON HIS WAY !!!!Andrew has really begun to shine. He is getting smarted everyday. He really does understand what we tell him. My DH tells Andrew "go sit and drink your milk or Barney goes off", and Andrew will walk over to his chair and start to drink his milk, because after all he doesn't want to miss his TV shows--hehehehe. Even with his speech delay, he tries to copy some words he hears us say. Like a few days ago, I kept saying "go" and after a while he looked at me, shook his head "no" and said the word "go" telling me he didn't want to "go" up the stairs at that moment, of course this sounds like nothing to everyone else but to me it tells me he does understand. Like if I say look Andrew isn't Big bird on TV and there is a bear, or a cat, or what ever, he will shake his head "no" and start laughing, as if to say your silly mom that's NOT big bird! He has begun to really enjoy music too. I have a bunch of kids audio tapes that we listen too in the car or while cathing. And if we ask him to point to who is singing from a book he can pick the right character. Andrew now loves to climb on to the new couch, and on to his toy box or the coffee table. But, if I hear him say "oops" or "uhoh", then I know he did something he knows he shouldn't have done.
June 98
June 11th, Andrew went to school (toddler class) by the bus/van, on his own, I had been driving him in all this time and then I just decided to try it. After all, he needs to go by bus this coming November when he turns 3 yrs old and goes to the public school. He did very well too, he didn't cry, but did look concerned that I wasn't coming along. And guess what? I didn't even cry putting him on the bus, I wanted too, but fought it, for his sake (what a wimp I am huh?) He leaves at 8:15am and gets home at 12:30, 4 hrs alone, what will I do?? Hehehehe.
We had move his toy box away from the Bow window in the living room this week, because he got so good at climbing onto it to look out the window. He loves to watch the kids play out side but it would scare the life out of us each time we caught him up there, follow above link to see a picture of him sitting on the toy box, just minutes from standing looking out the window.
I'm concerned of late, Andrew has not taken many steps, only when he *really* wants too and even then it's a struggle for him. I also have noticed that he's been dragging his right foot (without the brace) again, maybe a little bit more when he's tiered. Well, It's been about 5 wks now that I gave his PT the Rx for her to order him his rear walker, I asked her this week what the hold up was and she said something like, she was still looking into get him a loner to try. At this point I don't really care, or want a loner, I just want a walker. The ins co. will pay for it so that's not the problem. I know I asked her to look into finding out if we could order a walker with 4 wheels and order the stoppers also, so we (Pat and I) can see which is best for him. Yeah, we're still waiting, lets hope not for long. We keep going to the pool ever Thursday afternoon. But it's a long day for him and me too! Because we are up at 7am (he sleeps until 8:30-9am, the rest of the wk) goes to school then we leave for the pool at 2pm, we get back by 430pm, eat dinner at 5pm, take a bath, read a book, or listen to music (loves that Sesame tape), then it's bed time by 8pm.
July 98
July 31st- Well as you can remember I have been waiting for a walker for Andrew, it's been 16 weeks now. The first walker that came in was the same one he is borrowing and I didn't like it because it is a front walker turned around to be a rear one. The second one that came in was very weak looking (cheap), and it didn't fold and Andrew just didn't want anything to do with it. We have now picked out a different one. Many people from the SB list told me about the Kaye rear walker and this is the one I have picked. At first I wasn't sure what to get him, a 4 wheel or 2 wheel walker. But have decided to get him it w/ 4 wheels. He seems to do very well with the borrowed walker but if it had 4 wheels he could do a lot more on his own, it gets stuck on the grass. He has been taking more and more steps on his own, he'll walk short distance like from the coffee table to the kitchen gate which is about 6-8 steps. Oh and the other thing is that he can stand up from his chair and start walking (a few steps) and will just get back up after he falls, gee know that I think about it he falls like a pro...hehehe. He likes to walk holding on to only one of our hands. We have been thinking maybe this wait (for the walker) was good for him. Will let ya know what happens.He also, is starting to talk more. He now can say "what", "ball", "no", "bye", "hi", "oops" or "uhoh" and the word "more" is very clearly.
Aug 98
Aug 4- Andrew had a bad weekend, low grade temp, and cloudy urine. Took a sample in on Sunday, and Monday was told he had a UTI (last one was in Sept 97 remember it landed him in Children's Hosp for 5 days on IV's). Furadantin could not be used this time with this type of bacteria. He was put on Bactrim for 10 days. Will have a repeat urine culture after he stops taking the meds.Aug 25th Guess what? We finally got Andrew's walker!!! Can you believe it? Boy were they lucky I'm a nice person :-} Well, Andrew didn't seem to mind not having it. He is doing so well talking steps from the couch to the wall, or from the gate to the coffee table. He walks into the kitchen, he does this MORE often then crawling to get around . This is so great to see!! But this walker (Kaye) has four wheels so it will be better for out side. Two more words to add to the list of spoken words are " bubbles" and "me" when I ask him stuff like --"who wants more juice, or cookies?" or "who's my love bug, or who's my baby boy?" Andrew will say the word "me" and tap him self, it's so cute!! Oh, and this is very new but he can say "I love you" (very slowly) along with Barney....gee and I thought Barney was silly.......
Sept 98
Sept 3rd- Andrew got another UTI, that makes #2 last one was on Aug 4th.
The new words to add to his list is "up" he will say "up" with his arms up for us to pick him up, and boy is he getting heavy. The second new words is, "yeah" -it changed from a nod to this for yes and "more ball", "mum more" is the only 2 words he has put together so far. I just got the word that the team meeting for the IEP is going to be this month. I can't believe he will be leaving EI and going to pre-school is just over a month.
Sept 17th- Guess what? Andrew has an other UTI #3, or the one from the Sept 4th that never went away? Uro office said if he has no fever or no other signs they won't treat it. So the kid just suffers.......he's been good about it. We just make him drink more fluids and I give him cranberry juice during the afternoon.Sept 23rd- Andrew has been tested by the school PT, Speech, and OT. Now waiting for appt for the IEP meeting. I have been looking for all the information I can on how to have this IEP write to help Andrew with the latex issue. So wish us luck.
Sept 27th- I have been trying to put Andrew on the potty again. This time I took some advice that many of my friends on the SB-Parents list gave me. Andrew loves to blow bubbles, so he is alouded to blow bubbles in the bathroom only (usually an outside game) but it keeps him occupied long enough for potty time. He started to say "more bubbles".
October is Spina Bifida Awareness MonthOct 98
Oct 5th- Andrew has gotten yet another UTI. This makes his 4th one or the same one that just won't clear up, this has been going on since Aug 4. This time he has had a fever 103.8 and vomiting. Once again he was put on Bactrim for 10 days. Will have repeat test after he stops taking the meds, or wait until we see the Uro doctor Oct 15th, keep your fingers crossed.
Oct 6th- was my birthday (don't ask how old J ) and my wonderful husband bought me a new video camera a small VHS-C, now all I do is tape Andrew!!! :) But I will be adding new pictures this month. So please come back soon.
Oct 13- I had Andrew's unofficial IEP meeting, can't wait to read it. We talked about latex in the class and about the fire drills. They are looking for an aide for him also. They want Andrew to start pre-school on Nov 2nd, 2 days a wk half days. I will be taking him in on the 19th to view the pre-school.
Oct 15th- Today we took Andrew in for Urodynamics, and RNC and a ultra sound. Well, they have no idea why he keeps getting these UTI's but his bladder and kidneys look great. He has a large bladder capacity, low pressure, and no reflux was present. He will be kept on Bactrim for a month. Then he will have a repeat culture done.
Oct 19th- Andrew and I went to visit his new pre-school class today. I am happy to report that they took his latex allergy VERY seriously, and were concerned about how Andrew would do in this school. His first real day will be Monday Nov 3rd. New words to add to the list is "in"- "out" and "off".
Oct 30th- Today was Andrew's 3rd birthday, (but we will have a family party on Nov 7th) and it also was his last day at the Early Intervention Center's Toddler class. Katie's mom and I had Birthday party for the kids at snack time. Andrew will miss all of his friends, but Katie and Abby, he will miss the most, hopefully we will still see them at the Thursday's afternoons swimming group.
Oct 31st- Halloween, was great, this truly was his first Halloween because he knew what was going on, loved getting candy, he would say "BOO" when we got to the door. Andrew got pulled along in a little red wagon by me and his Auntie Paula. Andrew was the envy of the neighborhood, many kids where saying "I want to be in a wagon next year!" This year, Andrew was a Pumpkin! Check out the picture.
Nov 98
Nov 2nd- Andrew had his first day at the integrated pre-school, he will go Monday & Friday mornings by the mini bus and on Weds mornings I'll take him in for his PT & Speech Therapy. I took him in the first day so I could talk to his teacher Mrs. Fuhrman and his substitute Aid, who was also great with Andrew. Andrew loved being there so much he didn't want to leave. I have to say that the move from EI to pre-school has gone smoother then I had expected, and for that I am happy and need to thank Mary Ellen (from EI), Mary Jo (from the EI team) and all of my friends from the SB-Parents support list !Nov 7th- We had a birthday party for Andrew at our home. Boy, did it look like Christmas, he had so many presents!! We got him a ton of VCR tapes, some clothes, books, an ABC letters game, bubbles, and the rest I forget. Andrew's Vävo & Vavö got him a tricycle the type with the push handle on the back. I'll have photo's up soon!
Nov 12th- I got a call from the Pedi's office that Andrew has another UTI. The only reason they wanted to treat it was because of a low grade fever he had. So he was put on a new med that he had never been on before called, Suprex.
Nov 26th- We had a great Thanksgiving Day at Granny's house!! Andrew didn't want to try any of the turkey, but did eat the mashed potatoes.Dec 98
Dec 1st- Andrew now has his own aide at pre-school, and is doing very well. Today, I didn't send Andrew to school with his walker (I forgot) and got a note from his teacher that, Andrew did a lot of waking w/ out it. She said that Andrew isn't even using his walker in class because it is much faster for him to walk to what he wants by either holding to the aids hand or the furniture. He also, was doing a lot more of walking this past weekend at home (short distance) and we are so very pleased! His speech is finally getting better, he has dropped the sign for eat, more, and done (most of the time) and just says the words. He can string along 2-3 words. We are so happy he is doing so well in this school. Not that, EI wasn't great, but at this school no-one is crawling and he seems much more motivate there then at EI, he is learned so much there and now takes his coat off and hangs it and his school bag in his locker. He uses the words on and off, correctly.Dec 6th- Andrew has a few more words that he uses a lot. But he drops the first letter of each of them. For bus he uses "us", for cheerio's it's "o's" for home he says "ome", for please it's "peas", for tape please it's "ape peas", which means he wants to watch one of his MANY VCR tapes, so cute! He can now count to 5 pretty well but of course he adds a "P" instead of the "F" like for the numbers four and five. Andrew now can walk (short distances) w/ out the walker--it's so good to see him do this!!!!!!
Dec 12th- My Vavö (grandfather to me, great-grandfather to Andrew) passed away at the grand age of 99 years old. I had to take Andrew down to Plymouth for the wake and funeral because, Pat could not take any more days off. The night of the wake Stephanie and Stacey babysat him-- they feed him, played games and got him ready for bed. The next morning was the funeral, I took Andrew to the church and to the cemetery. Andrew was so good at church, my mom and dad in-law took care of him at church. My mom-in-law held Andrew's hand as he walked up to the alter, right passed Vavö's casket, there wasn't a dry eye in the place! I had already been crying but to see how well Andrew walked up and back just made me cry more, I guess happy tears too. Vavö, loved all of his grand kids, but I felt bad that we had never told him of Andrew's birth defect. I guess it was best this way. I'll miss you Vavö, rest in peace.
Dec 17t-, Andrew has more words to add to the growing list. He now can say "bus" and "home" correctly. He started to ask for "toast" and says it very clearly. He loves to wash his hands so he will say the word "hand" and sign clean up. When he hears the school bus beep at the door he will tell me "bus, bus, me, bye-bye". He loves school! His counting improves each day he can almost count to 10 on his own. His ABC's are getting better too, (he knows them all by sight) he only has trouble saying the letters g-h-j-k-q and w, but can point to the correct letter.
Dec 24th- We had our family over for Christmas eve, we opened our gifts (not Santa's) Andrew was a riot! He was so funny!!! He would open up a gift and looking it VERY carefully except if he opened anything with clothes he would toss them and say --"me more", he also helped open everyone else's gifts too.Dec 31s- We spent New years eve at my sisters house. Andrew would NOT go to sleep no matter how much we all tried to put him down, so I let him stay up with us until he fell a sleep on the couch at 12:40 am Jan 1st, HAPPY NEW YEAR TO YOU ALL!!!! Next month Andrew has a clinic visit, can't wait to see what they say about Andrew being able to walk without the walker!
