Update on Andrew
Jan 99
Jan 5th 1999 -New words to add are; wet, Vävo, Vavö, (which mean grandma and grandpa in Portuguese) snow, home, hand and for Stacey he leaves the "t" out and for Stephanie he says Teffy. He is stringing along 2-4 words now too.
GREAT NEWS!!!! Andrew has gone back to pre-school, and no longer uses his walker. The teacher sent home a note, saying Andrew no longer needed to come to school with his walker, because he was doing a fine job walking around in class with out it!!!!!!
Andrew has a dentist appt next month (Feb 11th) so I sent the office all the info I could find from Nancy's latex site (thank you Nancy). They were very happy with it and can order non-latex items that they will need to use on Andrew.Jan 13th- Andrew had a clinic visit today. We got to see everyone on the team. Although we already had the results from all the bladder testing (they where done in Oct) we talked to the Uro, Dr Bauer who was pleased as pie about the low pressure in Andrew's bladder and gave us the OKAY to go longer in between cathing since Andrew stays dry at all times. Now we cath 4 times a day and can go longer through the night YEAH! As for Neuro ~he said we didn't have to see him at clinic anymore unless we wanted to or had problems, since Andrew is doing well. I asked him about a yearly CT scan and he said it wasn't necessary to put Andrew (and us) through it yearly unless there was a problem, is this what others have been told too?? Also, because of Andrew's up coming dentist appt I asked him about having Andrew on antibiotics he said that the prophylactic antibiotics where not mandatory in any way for a VP shunt (they are not in the blood stream like VA shunts); but if I would feel better doing so and if the dentists wishes to give him antibiotics, he had no problem with that (the downside is small). I only asked because I had heard having dental work could cause an infection and I worried about his shunt, I feel better now. As for Ortho~ We got Andrew fitted for new braces, they will still be AFO's BUT his current pair will be cut down to only his ankles to give them a try (thank you Mike for the idea of trying this). If we see he does better w/ the short ones then the new ones then we will talk to Ortho about have the new ones cut down too. But if not I'll still be happy that he is able to walk in them, and us the old, short ones for swimming in the pool (he goes swimming every Thursday). The Ortho team were very please with how well Andrew was walking. They were not surprised that he gave up his walker (gee, and I fought to get him the Kaye style if you remember, now he doesn't use it) . They also told me to let him have some time out of the braces at home for him to walk around and build up some leg muscle. So, all in all things went well.
Jan 25th- I took urine in for a culture. Andrew has a low grade temp, and cloudy urine.
Jan 27th- Today found out Andrew has a UTI. They put him on meds for 10 days. Today we also went to get his new braces, they are AFO's no inside padding and they have the front plate on them like his very first pair of braces, these are called clam shell AFO's. I also, got the last pair cut down to just above the ankles to use in the pool. I did try him in the short AFO's but he walks better in the longer pair, no big deal for us, we are just happy he is walking!!
Feb 99
Feb 11th- Andrew had his very first dental apt, today. It was at 8am and we were the first apt of the day. I had asked the SB-list questions about this and received great ideas, am so thankful for everyone who was kind enough to e-mail me their thoughts. I am happy to report that everything went well, by 2pm he had not shown a reaction. Andrew, was a bit scared at first but he didn't cry. They are a Pedi Dentist office and the whole office was geared towards kids. This office specializes in "handicap children" and were very friendly. Andrew loved getting his teeth cleaned while able to watch the large TV w/ cable (he even held the controller; like father like son). They even had what looked like to me as a lift so that a child in a W/C could sit in their own chair during the visit. We were in and out of the office in 20 mins!! I of course was a basket case the night before, worrying about him having a reaction to the latex in the air and all. They were able to get all that was needed to use on him that was latex free......thanks to Nancy's great latex site.
March 99
March 3rd- Andrew has been making some funny eye blinking since Friday Feb 26th, after keeping an eye on him all weekend, I called around to have him seen. I took him to see the Mylo team today, they rule out shunt failure and AC problems but couldn't rule out seizures b/c he didn't make any of the eye blinking while we were there, (but of course he did start them shortly after we were home!) The team wants Andrew tested for seizures (an EEG) after he has been seen by an eye doctor.
March 4th- Today I took Andrew the eye clinic to be seen by Dr Hatch who is a Neuro-Ophthalmologist. He tested his vision and said it was normal, and noted "no optic nerve edema" which meant not shunt related, but b/c I was able to get Andrew on video tape making the eye blinking stuff he did say that he would feel better if Andrew got tested for seizures too. Now I'm just waiting for the apt for the EEG, will keep you posted.
March 19th -Took Andrew in to see the Pedi, b/c I thought his urine looked funny on Sunday (March 14th) but he didn't have a fever so I waited it out, until today they stated him on meds for 10 days.
March 22- So many of you that come here monthly or have e-mailed me to see how Andrew is doing with his eye blinking stuff, we have a apt on April 15th for an EEG and will see a neurologist on April 30th, I guess they are not to worried huh? I still see him do this 100 times a day but I'm not worried that its caused by seizures anymore.
Also, Andrew is walking so well now with just his AFO's that his walking w/out the braces have improved!!! WE are so happy to see him walking, it's been a dream come true!!! And as for his speech, I can't keep track of all his words he says so much now. He speaks in 3-5 words sentences. Can count to 13 with out help and loves doing his ABC's.April 99
April 15th- We took Andrew to Children's Hospital to have EEG testing. I was told by the EEG tech to kept him up the night before the testing until midnight and get him up very early the next day. And not to let him nap anytime before the testing. The poor kid was up that night until 11:45pm, he said "me sleep now mom", and took a pillow off the couch. Off to bed we went and Patrick got him up at 6am. So, you'd think with 6 hours of sleep he would be okay for the testing right? Wrong, he wanted to nap in the car which I couldn't let him do, so he would be able to sleep for the test. But he didn't sleep for the testing ! The EEG was stopped and now we see the Neurologist on April 30th, for a neurological examination to follow up the EEG that couldn't be done. I must say that I'm not concerned as much as I was before because Andrew isn't doing the blinking stuff all that much now. I'll let you know about the 30th, soon.
April 30th- Andrew saw neurologist Dr. Lousa Kalsner, after viewing my video tape of Andrew doing his eye blinking of 15-20 mins she felt that it was NOT seizure activity but a form of a tick-- not sure if it was behavior or not. At any rate, I am relieved that it's nothing serious.
May 99May 4th- I took Andrew to see his new Pedi today. I am so happy with him. If you haven heard why I changed Pedi's let me tell you why. After 3-1/2 yrs at this doctors office, I got sick of the unfair treatment I received there. Andrew's Pedi worked once a week after she had her 4th child, so Andrew never saw her unless it was for a well in advance appointment. The fill-in doctors never knew much about his case. I would have to remind him/her of things like; the latex issue, SB info and give a run down of all the doctors he has at Childrens Hospital. Then there was the time that this Pedi's billing department made an error, and drove me nuts b/c of a $5.00 co-pay. I called the billing dept after I found out the reason the ins had rejected their claim because the billing office didn't put in the correct ID#. She was rude and didn't believe it was her fault, so she had to call and bug them too. To make a long story even longer. The last reason for this change and my BIGGEST reason was because they did not have a handicap parking space. Yes that's right a doctors office with out a W/C spot. Not even ONE spot. After 6 months of getting the run around from them and my many calls to them. I got angry and felt I had to threatened them with a fine. After I told them that I talked to someone in the ADA (American Disability Act). They finally had someone paint a W/C on a parking spot. The spot was very SMALL and if Andrew had been in a W/C, I would not have been able to park there for the reason being the spot was in between the Pedi's business sign and the main entrance to the parking lot. BTW, they were very anger I left them (and I quote) "Your leaving the office after we went through the trouble of have a W/C spot made for you??" They acted as if they were doing me a big favor or giving me a new car. So, how's that for a short story???
Update: May 17th 99- Andrew has not been doing the eye blinking lately, lets keep our fingers crossed this is over now.
June 99
June 3rd- I called the Mylo clinic to have Andrew taken off the Ditropan and put on something else for the summer months. They gave him Detrol, will use this until we see Uro at clinic June 16th. I home this helps him stay dry like the Ditropan but with out the side effects.
June 14th- Today I noticed that Andrew had a high fever (or high at least to me) 103.8. He vomited right before he was really to eat his favorite chicken tenders and fries. He didn't eat dinner after that and went to bed a little bit earlier.
June 16th- Andrew had a Mylo visit today. Talked to Uro (Dr. Bauer) about how the Detrol doesn't keep Andrew from leaking. So, he is back on Ditropan but a lower dose, and Levsen also was added. Hope this helps. Ortho came into see Andrew thought he was going well, with his walking, wants to see him again in Dec for an X-Ray of his spine. He thought maybe his spina was starting to curve. Keep Andrew in your prayers that this isn't anything to worry about.
I got word this week that Andrew will be going to pre-school summer camp, stating July 5th. This is so great, he loves school, and this gives me the much wanted and needed brake as well.
July 99
July 12th- We are enjoying the summer here! Andrew is going to summer camp M-W-F mornings and loving it. He is now back on track with potty training. He is in regular under wear at home and sent to school in a pull up. Though he has only had one accident in his pull up since we started our bowel program. It was right after a very running BM after a babylax. But I'm scared if he is picked up and his tummy gets pressed to much he could have a smear at school, so for now he goes to school in a pull up. He is no longer having problems with over heating (even with the HOT weather) due to the change in the dose of his Ditropan, and he is not leaking.
Andrew's speech is coming along nicely too. He is still delayed but I hear new words a lot, he is not talking in complete sentences yet, but his speech is very clear.
July 28th- Andrew got home from camp w/ a temp of 103.5 almost 2 hrs later his temp was up to 104.3. I called the Pedi's office later that afternoon. I was told to give him 1 1/2 tbsp. of Motrin ever 6 hrs for 24 hrs, and to call the office the next day with an update.
July 29th- Andrew's fever had not come down less then 102.5 so I was told to give him Tylenol ever 4 hrs but 2 hrs after I gave the Motrin. He was sleeping allot, mostly from the fever and he was not drink much or eating anything. Called the Pedi and made apt to have him check out just in case.
July 30th- Andrew saw Dr. Ryan his temp was down to 101.0 he started to look a bit better but was very weak, the Dr thought he has a viral infection but wanted Andrew to have a blood test done to check his white blood count. It looked fine, so he also wanted a urine sample which at the office looked fine.
Aug 99
Aug 1 (Sunday)- I got a call from the lab that the urine culture didn't look good so far. But that if he looked worse to call the Pedi office. I was not worried b/c his urine looked fine at home.
Aug 3rd- I called the Pedi office b/c his urine was starting to look cloudy. She said she would look in his cart and would get back to me.
Aug 4th- I got a call at 8:30pm from (Andrew's regular Pedi, who is great and I love him) Dr. Kula, said that he thought the lab had lost the sheet w/ the numbers b/c it wasn't in his chart, but that the lab was closed so he was going to call the lab in the am to get a copy from them. I told him I thought he did for sure have a UTI b/c of the cloudiness of the urine and the was Andrew was acting. He said he would find out how high the numbers were and what the sensitivity was so e could treat Andrew w/ antibiotics.
Aug 5th- at 7:45 Dr Kula called to tell me that I was right that he did in dead have a UTI and that it was not a normal type of infection that they see w/ cathed children, he said it was a strep type of infection. He called in Amoxicillin for him to take 1 ½ tsp. for 10 days. Then he needs to get a repeat culture done. But at least Andrew no longer has a fever though he does feel "yucky".
Aug 9th- I have noticed that Andrew is starting to sort of drag or maybe just not pick up his right leg much when walking, I asked Andrew's Aid if she too had noticed this and she was going to ask the PT person what she thought about it.
Aug 11th- Boy do I feel dumb :} Today I was told that Andrew's sneakers are too small, and that he has been complaining about his right foot hurting him. Okay so I guess the problem is his sneakers and not what I wrote above on (Aug 9th). But I will buy him new sneakers and then keep an eye on his walking after that to see if it has helped, if not, I'll put in a call to the Mylo clinic to see Ortho. Maybe it can wait until I see the whole team again in Dec?! I hope so.
Aug 31st- Today Andrew had a 3-to-6 developmental teem evaluation was done at Childrens. We were on the waiting list for appt but not until some time in Jan 2000. They had a cancellation and asked if I wanted to take the appt. He was seen by a Pediatrician, Psychologist and Speech Pathologist. Well, I have not gotten the written report as that will take 6-8 weeks, but I was told they were happy to see that he had make a gigantic improvement from not talking to talking in complete sentences in just a few months time!! Even though I knew he was improving I didn't really realize how well he was doing, until today.
Sept 99
Andrew is walking better and better each day with only his braces! I am so happy with how well he is doing. He is on a bowel program that is working well, and is enjoying wearing his big boy underwear. Also, so many have e-mailed me asking about his speech, and I am once again happy to report that he is doing well there too. He still has problems with "she, her, he, and him" I don't see it as a problem but speech therapy is always sending home notes that they are working on his starting a sentence with "she is cooking", Andrew is the type of kid that uses a persons name like "mom is cooking, or Stacey is cooking". But we are working on it. That's all for now. Andrew has a birthday coming up on Oct 30th he will be turning 4 years old, so look for the pictures coming soon.October is Spina Bifida Awareness Month
Oct 99Since October is Spina Bifida Awareness Month, I faxed a few local news papers telling them this and asked them if they would print the SB fact sheet sometime this month. I got a call from one of the papers, they wanted to come out to interview me. Tues. Oct 12th, someone came out to write the story and on the 14th another person came out to take pictures of Andrew, playing a CD game called Blue's Clues. I'm not sure what I really said so I'll have to wait until it's out on the paper to read it. I did give her this web address, and she said she would look it up.
Oct 21-The Article came out today, I'm not that happy with the Head line. Bellingham boy bet odds. But the article was almost word for word what I have on "My Story" page. A few things were miss quoted, but I know that they often do that, miss quote people. I have the whole article copied here it-- article.
Oct 30-Today is Andrews Birthday!!! He is now 4 yrs old. We had a Blue's Clue's theme for his party. There were 10 kids including Andrew. I took a picture of each child sitting on a blue chair with Blue (the stuff dog) on there lap. The children were aged 13 months to 8 yrs old. We had a good time with games like "Steve's say's" instead of Simon says, we played "pass blue" (the stuffed dog) instead of pass the potato, and "pin the paw print on Blue" instead of pin the tail on the donkey. It was fun. Then to let the kids know it was time to have cake and ice-cream we played a game of Blue's Clue's. I taped three paw prints on three clues. Then I read the each clue out loud the kids had to find the clue. The first clue read "Where does Andrew go when he wants to watch a Blue's Clue's tape?" A plastic fork was taped to the TV. The second clue read "Where does Andrew keep his pillow?" A paper plate was taped to Andrew's bedroom door. The third and final clue read "Where does Andrew play with bubbles and bath toys?" A paper cup taped to the bathroom tub door. Then from these three clues they had to guess what was next. Yes, they all figured out Blues Clue's and all won a Certificate, that stated "child's name figured out Blue's Clue's because I'm really smart!!!"A fun time was had by all, even the mothers (my friends enjoyed it too).
Nov 99Nov 6th- A family party for just cake and Ice-cream. See a few birthday pictures here.
Dec 99
Dec 8th- Today Andrew went to the Mylo clinic. He had an ultra sound of his bladder and kidneys. Andrew also got a standing x-ray of his hips and we found out that his hips are part way out of the socket. Ortho said he would need surgery to repair them. We go back in 6 months and will have another x-ray. This news did not sit well with me at all. Ortho said this surgery will set him back 6-9 months. First we would be in a body case for 6-8 weeks, laying flat on his back for the whole time, then once the cases were off he isn't allowed to bare weight on his hip for 3 weeks. He also said that Andrew would need 6-9 months of serous therapy. But the out come for the future after he is healed is great. He says Andrew is a strong walker and this surgery will improve his walking! He also okayed new braces, he ordered Andrew some hinged AFO's. So Andrew can move his ankles 10 degrees up and down to help him build leg muscles. The braces look a bit funny but he walks fine w/ them after a day or so. I have pictures of the new braces here.
Andrew also got tested for CMV since I told the Pedi that I wanted to get pregnant soon, got the news that Andrew is shedding the CMV infection right now so to hold off on getting pregnant at this moment. Don't really know what will happen now. He is not sick. We already know Pat, Andrew's Dad was sick w/ CMV in 1996 but I never got tested b/c I wasn't planning on getting pregnant then. I'll keep you posted.Dec 24-25, 99- Andrew got so many cool gifts for Christmas. I mostly video taped him, I forgot to get many pictures of him, but I will post them on the picture pages soon.
Dec 29, 99- I got tested for CMV and am now waiting for the test results.
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