Update on Andrew

January is National Birth Defects Prevention Month

Jan 2000

Andrew started walking without his Kay-walker ONE year to date!!

Jan 1st - Andrew fell a sleep at about 9:30 P.M. So he didn't see the new year come in with us. But the next day he had  lots of fun with the noise makers :)

Jan 3rd -Andrew had his 4 year old check up at the Pedi's office. Dr Kula was happy to see Andrew doing so well. He had Andrew's iron level checked and gave us the okay to take him off the iron vitamins and gave us a new RX for regular vitamins. We told him of Andrew's up coming hip surgery (sometime within 2 yrs), and he said to let him know a few months early so he could get all the medical stuff needed in place. Andrew got his hearing and eyes checked too. His hearing is great in both ears, but he failed the eye test. I was told to make an apt for him to see his eye doctor in Boston Children's hospital. 

Jan 7th- I got the results from my tests for the CMV (Dec 29, 99). I tested positive for CMV so now I don't have to worry about my next pregnancy, thank God.

Feb 00

Feb 3  -I took Andrew's urine in to have it tested as we always do every 8 weeks per the order of the Urologist Dr Bauer. It was great time too because the urine was starting to look cloudy. Andrew was starting to tell me he needed to pee by saying "my belly is hurting". Sure enough the next day we got the call that the urine culture was positive for e-coli at over 100,000 and that he was putting Andrew on Bactrim at 2 tea spoons 2 times a day for 10 days.  I had been giving Andrew 2 cranberry pills on a daily bases up until of course the day I ran out. He was off the cranberry for 2 wks and "BAM" he got his first UTI in 6 months (since the last time I ran out of them). Now if I was not convinced that the cranberry was working I sure am now!!

March 00

One year to date that Andrew has been out of diapers full time and in underwear and on a successful bowel program!!  YEAH!!!

March 8th -Andrew when to see his Pedi ophthalmologist for a eye check up. I made him this appt b/c back in Jan at Andrew's 4 yr check up at his Pedi's office he failed their eye test. We went to Ch of Boston to see Dr Fulton. He had a great eye apt, the doctor said he was seeing 20/20 and that his nystagums was not present. She told me not to worry about the Pedi's eye exams. We will see her in 2 yrs.  Andrew did great even with all the eye drops she needed to give him, she was so cool, she had Big bird animals to distract him and he was happy.

March 13th - We got a call from the DMR of my state that they found us a "new" respite care worker. We have been with out one since April 98. Not sure how many hours they will give us or when this will start, but I am happy to have someone to come in and baby sit and play with Andrew so my husband and I can get out for a couple hrs. 

UPDATE: As of today 12/03/00 we still have not heard back from them, nice huh? At this point with the new baby I won't be needing a sitter for Andrew b/c I will be home with Shane .

April 00

Nothing new to report. Andrew is doing very well. Talking a lot and asking me a ton of questions we are calling him "the question man" and is cute as can be!

May 00

We have great news,  we shared with Andrew and now it's time to share with you too. We are expecting our second child. Andrew is so excited!! So is mom and dad!! 

June 00

Andrew's last day of school was June 9th, and started summer camp on June 26th. 

June 28th -Andrew was the team at the Mylo clinic. He had hip x-rays, and we were told that we could wait another 6 months for another set of hip x-rays to decided on when to do his surgery so we go back Dec 27th . Both hips will be done as they are part way out of the socket, and leaving them like this because he is a strong walker would in time wear out the hip sockets.

He also had urodynamics testing for his bladder to check for tethered cord which Ortho wanted Uro to check on because Andrew's balance while walking has been off lately. Uro didn't see a change in the bladder testing which is great b/c this means probably no tethering and so he wants this urodynamics testing to be done again in November.  So, all in all it was a good clinic visit even with the tethered corded scare!

July 4th -Took Andrew to see our family on the cape for a weekend over the long 4th holiday. We took Andrew to see the Plymouth parade and he loved it as usual but this time he loved the fire trucks and the noise did not bother him as it has in the past. He even wanted to see the fire works in down town Plymouth harbor, he was so sleepy until he heard the first fire work go off then he was up. Again the noise did not bother him this was the first fire works he had EVER gone too but he LOVED it!

July 26th- Andrew now has his own PC because my husband didn't want to share "his" any more. So now, all three of us have our own PC's. Only mine and Patrick's are on line of course but Andrew loves having "his" own PC and is found many times playing educational games on his own. He also is learning to read small words which I am very happy to see.  Andrew is still in summer camp which ends Aug 11th.

Aug 00

Aug 11th- Today was the last day of summer camp. He's very sad that he will not be going back for a while.

Aug 29th- We took Andrew to see Dr Madsen, Neuro-surgeon today, because his walking from June (last clinic visit) was getting a bit worse. But he ruled out a tethered cord, but wants to watch Andrew. Next Apt will be urodynamics testing Nov 7th.  I got a call from the school today that Andrew will have a new one to one aid for this year. He will be going mornings. Monday through Friday, then we might add 1-2 full days for new semester.

Aug 30th- I took Andrew for his pre-school orientation day. We also meet the new aid who just happens to be a friends of mine. Hope it works out. I told her she will have to push Andrew to work harder b/c he knows her and might try to get a way with not working his hardest. I am nerves about this.

Sept 00         

Sept 5th- Andrew started his first day of pre-school (this will be his last year at this school), he stared with  a new aid, a new bus driver and some new kids. He was very happy to see his old friends and had a great day at school.

Oct 00

Oct 1st- We moved Andrew's room to a down stair room. He has been doing great. Now we can change his old room into the baby's new room. We painted Andrew's room, put up a space scene boarder, put up glow-in-the-dark stars and planets on the ceiling, put up his name in bright letter on the wall over his PC and moved his toddler bed into his new room.  We ordered him a twin bed (with mattress and bunky board) and tall chest that will be coming this month. I'm a bit nervous about him sleeping in a twin size bed, but my husband thinks he will do fine!

Oct 4th- IEP was today, Andrew has done so well in school this past year, we are very proud of him.  He has done great in speech that she says he is at age level and will decrease his SP time to 1 time a week. PT and OT will remain the same and they will work on his upper body now to get him ready for his W/C for after his hips surgery. PT also wants us to push Ortho to have Andrew have surgery in the winter in stead of the spring so that he will not miss to much of kindergarten and not be kept back.

Oct 14th- Twin bed for Andrew came in (see photo's here of his new room.) I got a wooden step stool with two steps so he can climb into bed and out of it on his own. He did great the first two nights he did wake up about an hour later but other then that he is sleeping great, and I couldn't be happier that he loves his new room. This is also good because he does not miss his old room, and when he asks he stuff about why his brother will have his old room he doesn't seem to mind just wants an answer.

HAPPY "5 th" BIRTHDAY TO ANDREW
Oct 28- Andrew's birthday is Oct 30 but I had a small family party for him today. He had a great time, got lots of toys, new sheets for his big boy bed, a spring jacket and other smaller stuff. Loved to play and watch everyone lay "pin the tail on the donkey".

Nov 00

Nov 7th, We took Andrew to Boston's Children's Hospital for more bladder testing, all looks great! His pressure are nice and low, and we don't need to go back for a 1 - 1  1/2 years for bladder testing. Although we do have an apt in Dec to see Ortho and get x-rays of Andrew's hips to schedule his surgery on both hips. I will keep you posted.

We also registered Andrew for kindergarten for the 2000-2001 fall year. We talked to the nurse and had a meet to go over all the latex precautions, I'll have another meeting with the whole team soon.

Nov 27th, Andrew became a BIG brother today! Shane Eric was born, Andrew came to see me and Shane the next day and Andrew got to wear his "new" big bother T-shirt the day after Shane was born.

Dec 00

Andrew had a great Christmas, he got a TV so that we could have our TV back in the family room. He got a ton of PC cd's and nice clothes. He enjoyed opening up all the gifts even the ones for his baby brother Shane! 

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