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Wednesday, March 12, 2008 9:18 PM CDT

Unfortunately, I spoke too soon when I posted how great Shelby was doing back in January. February 14th she had a seizure and things have not been good since. She developed a new repetitive movemnt that involved her mouth and tongue. The medication she was taking for her other movements was not working for these movement so we are in the process of changing medication. She also continues to have seizures. These mouth movments have made it very difficult for her to eat and drink and she has lost 3 lbs. since January 28th, she is extremely skinny and may possibly be dehydrated. The neurologist is encouraging us to meet with her pediatrician and GI and consider a feeding tube once again. It is strange but we were in this same place a year ago, although the reason she would not eat was for another reason, probably reflux. The doctors make the issue of a feeding tube seem like it really is no big deal and that is will make our lives so much easier, but I just cannot seem to convince myself that it is not a big deal and something I am just not ready to do. I look at the quality of life that Shelby has now and it just does not seem like she is happy, content or enjoying any part of life. She mostly lays in bed or sits in her wheelchair. We do things with her and we get very little to no reaction from her. On the other hand she is still alert, she watches us and where we are going and what we are doing. She holds are hands and seems to like our company, so it is just hard to decide what she would want. My thoughts are to give the new medication a chance to work and then if it doesn't work or she does not start eating and drinking if it does work we will have to dig really deep into our hearts and decide what to do.

Thanks for thinking of Shelby and dropping by.

Hugs,

Wednesday, January 16, 2008 12:23 AM CST

Today my little girl is 13 years old, it is hard for me to believe! I have been reflecting today about our lives and where Shelby is right now. Last year at this time, Shelby spent most of her time laying in bed, not moving, not doing anything. She would not eat and she would not drink. We were using a syringe to get liquids and a very high calorie nutritional supplement down her. She was losing weight and was down to skin and bones. We were considering a feeding tube. In February she started having convulsive type seizres and I was really getting scared that we were approaching the end stages of her life.

Today I can report that she is much much better. She now eats really well and drinks well most days. She does still like to lay in bed, but she is very active when she is laying bed. She can now sit on the side of the bed with our assistance and sits up well in her wheelchair most of the time. She does well in her gait trainer most days and seems to really enjoy the activity. She will now reach for things and try to activate some o fher sensory toys.

I am so pleased with where she is now and feel very blessed that she is doing so well.

Happy Birthday, my sweet litle girl, mom and day love you very much!

Sunday, September 30, 2007 2:37 PM CDT

Hi Everyone!

I thought it was about time that I posted an update. Overall Shelby is doing well, she has experienced several ups and down in 2007, but seems to on an upward move right now.

Since I posted back in March, Shelby continued to have seizures, but a pattern began to develop that indicated these seizures were probably hormone related. The seizures would last for 2-5 days every 4 weeks. Eventually in September Shelby started her period. We got a shot that should help regulate the hormones and possibly ultimately stop her periods. We are hoping this will help control the seizures better also.

Shortly after her first period, Shelby developed a bladder infection. She had just got over the cramps from the perios and the kicking, thrashing and screaming and it started up again. I was baffled for a couple of days, but finally figured out it was a bladder infection. She finally stopped the thrashing, kicking and screaming a couple of days after she started taking the Bactrim. She continued to constantly want to roll over and lay on her stomach in a fetal position until just the last couple of days, so I hope that is a sign that the bladder infection has completely cleared.

Unfortunately it has been 4 weeks since that first period and she had another seizure early Saturday morning and was pretty much out of it most of the day yesterday. She did not have a seizure last night and seems better today.

She has been making great strides otherwise. She does a lot of walking in her gait trainer and this has helped tremedously with her mobility and over all health. She is eating much better and drinking better, too on most days. She is reaching for things again and when sitting at the table, constantly grabbing things and throwing them in the floor! Yes, I know when she was younger this was quite and irritant, but when she stopped moving at all at the first of the year, to see this is quite exciting for us now! She still never laughs, but occassionally we see the glimpse of a small grin. I miss her laugh terrible and cherish those little grins everytime I see them.

I hope everyone who drops by is doing well!

Sheila and Shelby

Monday, March 12, 2007 9:01 PM CDT

Well I thought I would do another update to let everyone know Shelby has been doing much better. She seems to be adjusting to the new seizure medication and doing pretty well. Now that she is off the Trileptal, she seems much more alert and much stronger. She has almost completely stopped drooling and has been sitting up on her own more again. She finally got the gait trainer (walker) at school and has been doing very well in it. We are still working on getting one for home, too.

She was fitted last week for a brace to help with her scoliosis. We found out last month she has a 40 degree scoliosis. This scolisosis developed very quickly and the orthopedic states it is caused my neuromuscular weakness. I agree with him, however I believe the fact that she has a vitamin D deficiency also caused this to happen and is why it developed so fast. In my research I have found a lot of information about antiseizure medications and vitamin D deficiency. Someone on the MPS Forum even found an article about skeletal issues in Sanfilippo and it seems to be more of an issue than I was originally aware of. It all makes sense now, as this has progressed, Shelby gets little to no sun exposure, she was walking less and on a very high dose of seizure medication. All things that can cause a vitamin D deficiency. Along with not eating very well.

We have also consulted with a G.I. about a feeding tube. It has been arranged that when we think it is time to get one we just need to call her office and let them know and they will schedule the surgery. We are just not ready to go that far yet, we are going to continue to try to get her to take in enough calories by mouth, but it is getting more and more difficult.

We finally got an appointment with a new neurologist for March 27th, so I am looking forward to meeting this new doctor. I hope she is more responsive than her previous neurologist. She also has her annual appointment with the cardiologist coming up on March 29th.

Thanks for dropping by. I hope everyone who drops by is doing well.

Saturday, February 10, 2007 2:32 PM CST

So far 2007 has not been a good year for Shelby. She started getting sick or something sround Christmas time. She because very weak and limp and did not want to eat. We started her on a new nutritional drink with higher calories and she seemed to be doing really well, she was eating well and getting stronger. Then last week on Feb 1st she did not want to eat much for breakfast, about 11 am she started being very fussy and unconsolable. She would not eat and this continued for the rest of the day. By 7 pm that night we decided we needed to take her to the ER to find out what was wrong. She seemed to have some right side tenderness, so we were concerned it might be appendicitis. All they could find after an abdominal CT scan, blood work and urinalysis was elevated liver enzymes. The ER doctor told us to discontinue her seizure medication, Trileptal, as this medicine could cause the elevated liver enzymes. They have been slightly elevated in the past, but they were really high on the 1st. We were not too concerned about stopping this medication, as Shelby's type of seizures were not severe (they were only at night and were like night terrors). Well that was not a good idea, Shelby had her first grand mal seizures Saturday morning around 8 am. She was breathing very oddly afterwards so we took her to the ER. They did a brain CT, chest xray and everything checked out okay. They gave us a new seizure medication and sent us home. Shelby still was not breathing right, but the doctor thought once the seizure medication kicked in she might start breathing okay. Well about 3:30 she had another seizure, we called the neurologist on call and found out the ER had told us the wrong amount of seizure medication to give Shelby when we got home, so we gave her the additional dose and hoped for the best. She then had another seizure at 11:30, the irregular breathing had never stopped and would get worse again with each seizure. We went back to the ER and I was determined they were going to fix the breathing problem before we left. She had another seizure while we were in the ER and they gave her some Ativan, then gave her a loading dose of Keppra. She went to sleep, totally relaxed and started breathing normally. We finally came home around 5:30 am Sunday morning. The original plan had been to admit her to the Children's Hospital, but there were no beds. So they just kept us in the ER until they felt she was doing okay. Our nurse has a daughter with seizures and she was the one who kept on the doctors to make sure they did not send us home too soon. Shelby has been slowly but surely getting better and now we believe that on the 1st she just had a virus. Poor kid, she went through way too much for all of this to have just been a virus.

I am hoping that the rest of the year goes alot better than it has so far for her.

Thanks for dropping by.

Love,
Sheila

Tuesday, November 28, 2006 5:17 PM CST

I hope everyone had a Happy Thanksgiving! It is hard to believe it is Christmas time again already!

Shelby is doing well. She has remained fairly stable for the last several months now. We continue to see small amounts of regression, but not at such a rapid rate as it was before. She has days occassionally like today, where she is very sleepy, does not want to walk and is fairly unresponsive, but they do not happen very often.

There is not really much to report this time. Thanks for dropping by!!

Love,
Sheila

Tuesday, October 3, 2006 5:34 PM CDT

I thought it was about time to update again. The new picture of Shelby is after her Fall Celebration at school. She was not much into sitting up so I just took her picture while she was laying on her bed. This is pretty much her favorite postion now.

She has been back in school for a little over a month now and she is doing very well. She is walking better, trying to sit up on her own more and seems much more alert and bright eyed than she was this summer. She is eating much better, too and looks like she has put on a few pounds.

She has also been taking the genistein regularly for over a month now so that may be part of why she is doing so much better. You never really know for sure, but it is always wonderful to see no matter what the reason!!

Thanks for dropping by, I hope everyone is having a nice Fall.

Love,
Sheila

Friday, August 18, 2006 8:27 AM CDT

Wow!! Another update in the same week. I must be on a roll.

We met Shelby's new teacher yesterday and I really like her. I think this is going to be a good year at school. The school is newly built and really nice. The classroom is nice and roomy and the bathroom and changing table are in the classroom. There will be 10 kids in the room and Shelby will still have her own one on one aide. I will spend the day with them on the first day of school, Monday the 21st, to help them get to know Shelby, her likes and dislikes, her routine, etc.

Shelby was finally approved for the Home and Community Based Waiver. This is a Medicaid waiver that will finally provide her with all the services and equipment she will need and will provide us with some financial relief of the cost of her medical services and medications.

Shelby still continues to struggle with her eating and drinking. We are not as concerned about her eating as we are her drinking. We are having a very hard time getting her to drink very much, but she does not seem dehydrated. We are considering whether or not we should go back to the GI doctor and discuss a feeding tube. Time will tell. We will probably wait and see how she does at school.

I hope everyone had a great summer. It really flew by. It is hard to believe Fall is around the corner and then the Holidays!!

Love,

Monday, August 14, 2006 4:34 PM CDT

Well I thought it was about time that I did an update even though there is not too much to report. Shelby is doing pretty well. She has been out of school for over 2 weeks now and I do believe she is getting quite bored with my company. We are both going a little stir crazy. School starts a week from today and I think she will be ready to get out of the house.

She has her good days and her bad days, but over all she is doing pretty well. She is still struggling with her mobility and it just seems to be getting worse. I don't think it is going to be too long before she can no longer walk even with assistance. She is getting very picky about what she will eat now, too. She has decided that if it doesn't taste sweet she wants no part of it. We were already pureeing most of her foods, but now she will mostly only eat applesauce, yogurt, pudding, sweet potatoes and pureed fruit. Oh well, at least she will still eat!!

We started her back on the genistein about a month ago and it has seemed to help her to be more alert, but that is the only difference we have seen so far. I finally broke down and ordered the big bottle of the genistein today, this bottle should last for over a year so I think we are pretty committed this time to stick with the genistein. There sure seems to be a lot of good positive reports coming out about the genistein and it's benefit for children with MPS III. Thanks for dropping by!

Love,
Sheila

Tuesday, May 2, 2006 7:59 AM CDT

Wow!! I just now had a chance to read the guestbook. Thank you to everyone for the birthday and well wishes for Shelby. Sorry I have not posted an update in a long while or visited anyone's site. Things have been crazy around here.


Shelby is doing okay I guess all things considered, but it sure has been heartbreaking to watch the slow decline in you health and mobility. She got botox injections in her calves again last friday to see if we could loosen up the tight muscles in her calves that are causing her so much trouble with her mobility. We did not she the quick improvement we saw 3 years ago, but there is slow but steady improvement.

Shelby has an appointment with a GI doctor this afternoon. Her liver enzyme levels have been elevated on 2 different occassions over the last couple of years and her doctor felt we should take her to a GI. Although both times the levels have gone back down, I decided it would be a good idea to go ahead and get established with a GI. We can get this liver issue checked out and touch base with her about some of the feeding and drinking issues Shelby is starting to experience.

We recently decided that Shelby will be going to a different school next year. I am just waiting to hear if her one on one aide will be going with her. I really like Laura and will be much more comfortable with the change if she goes with Shelby. Wonder what I could do to bribe her?? LOL

Thanks again everyone for checking in on Shelby. Hugs and much love to everyone.

Sheila

Monday, December 19, 2005 10:07 AM CST

Well we are finally getting settled and hopefully will be staying put for awhile. We are now in Edmond, Ok only 3 hours from where my mother, Kevin's parents and both of my grandmother's live. It has been nice having family close. We have already been to visit for a family reunion and Thanksgiving in November and will be going back for Christmas.

Shelby is doing well. She is getting settled in her new school and is already making progress. Her walking has improved and she even surprised us about a week ago and got up off her bed on her own and took off walking, out of her room, down the hall, turned right and headed for the living room. She walked around for quite awhile on her own without falling. Of course once we got in there and started hovering around her because we were afraid she would fall as she has in the past she started having some trouble. Our hovering and getting in her way seemed to effect her ability to balance herself. She is also trying to hold her sippy cup on her own again and trying to feed herself. She seems much more alert and engaged now, too. I think she is happy to be settled in a house and have her own bed and tv back!!

The school has set some high goals for Shelby and I was concerned at first that they were expecting too much, but Shelby has surprised us and she is making progress on some of these goals and tolerating things that she never would before. It is always good to have a new perspective from new school personnel.

We are now busy with the holidays. The weather is not cooperating with getting everything done and I for one am having trouble getting used to the weather. It is very windy here in central Oklahoma and of course much colder than it was in the Houston area. Although I was born and raised in NE Oklahoma, living in Texas for the last 18 years has definitely made me a wimp when it comes to cold weather!!

Thank you for checking in, sorry for taking so long to write an update.

I hope everyone has a wonderful Holiday and a Happy New Year!!

Love,
Sheila

Thursday, July 7, 2005 9:30 PM CDT

Shelby has been doing well. She had 2 nights of not sleeping well, as a matter of fact Tuesday night she did not sleep at all. She slept well last night so hopefully the sleeping problems was a one time thing.

She is on a break from school this week so we have been hanging out at home. It is so hot here right now we have not ventured outside much. I am sure she will be happy to get back to school on Monday.

We started Shelby on a soy extract supplement with genistein. Genistein has been shown in cells in a petri dish and in rats to reduce the amount of MPS storage. It has also been shown to cross the blood brain barrier. I had planned to wait until after we moved to start the genistein, but had been reading so many good reports from other parents who were trying it that I decided not to wait. We are hopeful that Shelby will respond as well as the other kids have to the genistein.

As some of you know the sale of our house fell through, the buyers loan was denied. We had 2 showings today and have already received one offer and there is a good chance we will get another one from the second showing, so hpefully we will get the house sold soon so we can move on to Round Rock and Kevin can stop making that long commute.

Thanks for checking in!!

Hugs,
Sheila

Wednesday, June 8, 2005 1:04 PM CDT

Shelby is enjoying her break from school. She has been lounging around in her room until 10:00 or 11:00 every morning just chilling out. I think she misses going to school though. She misses her friends and all the activities they do at school. Mommy is just not very creative and runs out of things to do quick.

Thankfully, summer school starts next week so she should be happy about getting back to school.

Thanks for checking on Shelby. I hope everyone is having a great summer!!

Love,
Sheila