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Friday, January 8, 2010 1:14 PM CST
You with the sad eyes
don't be discouraged
oh I realize
it's hard to take courage
in a world full of people
you can lose sight of it all
and the darkness inside you
can make you fell so small
But I see your true colors
shining through
I see your true colors
and that's why I love you
so don't be afraid to let them show
your true colors
true colors are beautiful
like a rainbow
Show me a smile then
don't be unhappy, can't remember
when I last saw you laughing
if this world makes you crazy
and you've taken all you can bear
you call me up
because you know I'll be there
And I'll see your true colors
shining through
I see your true colors
and that's why I love you
so don't be afraid to let them show
your true colors
true colors are beautiful
like a rainbow
Wednesday, December 9, 2009 5:36 PM CST
"You Are Not Alone"
Another day has gone
I'm still all alone
How could this be
You're not here with me
You never said goodbye
Someone tell me why
Did you have to go
And leave my world so cold
Everyday I sit and ask myself
How did love slip away
Something whispers in my ear and says
That you are not alone
For I am here with you
Though you're far away
I am here to stay
But you are not alone
For I am here with you
Though we're far apart
You're always in my heart
But you are not alone
'Lone, 'lone
Why, 'lone
Just the other night
I thought I heard you cry
Asking me to come
And hold you in my arms
I can hear your prayers
Your burdens I will bear
But first I need your hand
Then forever can begin
Everyday I sit and ask myself
How did love slip away
Something whispers in my ear and says
That you are not alone
For I am here with you
Though you're far away
I am here to stay
For you are not alone
For I am here with you
Though we're far apart
You're always in my heart
For you are not alone
Whisper three words and I'll come runnin'
And girl you know that I'll be there
I'll be there
You are not alone
For I am here with you
Though you're far away
I am here to stay
For you are not alone
For I am here with you
Though we're far apart
You're always in my heart
For you are not alone
For I am here with you
Though you're far away
I am here to stay
For you are not alone
For I am here with you
Though we're far apart
You're always in my heart
For you are not alone...
Friday, October 2, 2009 8:07 PM CDT
It has been over 4 months and the pain is still unbearable, we are so lost without Andrew. Andrew's birthday will be next week and the thought of celebrating life without him will be devastating, we are trying to live day to day but it is just not the same. Andrew will continue in our hearts forever and when we join each other in heaven we will never let him go. We miss him terribly and thank God for giving him to us for a short time.
Daddy, Mommy, and Alex
Sunday, July 19, 2009 7:53 AM CDT
Congressman Geoff Davis called Friday, they are flying the flag in memory of Andrew on Sunday, July 19th. This marks 2 months since he gained his wings. Please take a moment to look up into the sky and remember my sweet beautiful Andrew. It's a bird, no it's a plane, no it is Superman Andrew!!! Fly high sweet baby!! Mommy, Daddy, and Alex misses you so much!!
Tuesday, June 16, 2009 3:53 AM CDT
Andrew, my life was meaningless and empty until you born. You taught me more about life than I could have ever learned. I did not fully understand the true meaning of love and you taught me. Your love was nothing but pure and unconditional and made me fulfilled.
I will forever miss your beautiful smile and kissing your sweet little face, seeing your joy as you laugh, hop, and run through the house with excitement. The pure innocence as you threw your sippy cup or knock something into the floor. Just to look at you and be proud of who you are knowing that I am blessed to be your dad. I miss being able to hold you and feel the love as you wrap your arm around my head and lean on me for comfort. I enjoyed being your security blanket and I am glad you chose me for that. I am the man that I am today because of you and I owe you everything for that.
I can honestly say that I have a better appreciation for life because of what you taught me. You taught me to enjoy the simple things in life and to enjoy every moment. A laugh or smile a day can overcome all of the insignificant moments and I thank you for that.
Andrew, I miss you so much that it would be immeasurable. I enjoyed taking care of you and being there for you. I can not begin to explain the devastation that I now feel. I do not understand why you and so many other children have to suffer so, hopefully someday when we are together in heaven I will. But for now my life seems to have no value and I do not know how to live without you. I loved you more than my own life and I am forever thankful for you. I wanted to let you know what you meant to me and how gracious I am that God selected me to be your father. Forever you will be my son, my best friend, and my precious angel. I love you Andrew.
Thank you
Daddy
Sunday, May 31, 2009 4:01 PM CDT
We want to Thank everyone for the love, support, and prayers for our family. We have lost our best friend; our beloved Andrew. The pain of not having him with us is unbearable. We long to hold his hand, touch his sweet face, kiss his sweet lips, and hold his little body. Life will never be the same without him. We were truly blessed to be his parents. We are thankful that God choose him to be a part of our lives he taught us so much.
Colin, Paulina, ^^Andrew^^, Alex
Tuesday, May 19, 2009 8:19 AM CDT
Our sweet beautiful Andrew gained his Angel wings at 2:15 this morning. Even thought he is pain free we do not know how to go on without him. He was our world.
http://www.chambersandgrubbs.com/runtime.php?SiteId=4350&NavigatorId=63525
Visitation will be Wednesday from 5 to 8 p.m. at Chambers and Grubbs in Florence. Funeral services will be Thursday at 10 a.m. at the Warsaw United Methodist Church, 204 E Main, Warsaw, KY 41095. Interment will be at Warsaw Cemetery.
Memorials can be made to The Isabel Jurado Foundation http://www.isabelfoundation.org/, The M.P.S. Society, 4220 Apex Hwy., Durham, NC 27713 http://www.mpssociety.org or Hospice of Northern Kentucky. http://www.hospicebg.com/northern.html
Thanks for all your love, support, and prayers.
Colin, Paulina, ^^Andrew^^, and Alex
Monday, May 11, 2009 10:24 AM CDT
I have not wanted to update anyone on how Andrew is doing. Our heart is simply breaking. We were hoping and praying that he would bounce back but his little body is giving out. His organs are starting to shut down. He has fought a hard battle. He is tired of fighting. He is telling us it is time. Please keep him in your prayers that he is pain free.
Monday, April 20, 2009 5:53 PM CDT
Andrew has been about the same. He has been sleeping most of the time still. He has had several days where is his stomach has been giving him so much discomfort. He is having so much gas and constipation. His urine output is very low. He is very pale. I pray to God to give us strength to get through this and not to have Andrew suffer. He has had a very hard life. He has had so many problems, I just want him to be pain free.
He has had several visitors over the last couple of weeks. My whole family came up on Easter. We had some great food, a Easter egg hunt, and lots of laughs. Colin's brothers came down, one last week and one this week. Andrew teacher came down yesterday to visit with him. He loved her so much. He never did say her name he always called her She-She. We do not know where he got that from because her name is Joann.
Colin is about done with his semester at school. Not knowing what tomorrow is going to bring and having to make the decision now about the Fall semester he has decided to wait to start the nursing program. I have been working more. It has not really affect my back. I thought for sure it would hurt worse but it has not yet. Keeping my fingers crossed. I hope the procedure that I am going to have done in May takes care of my back pain for good.
Alex is doing really well. He cannot wait until school is out for the summer. I just cannot believe he will be in second grade. He has grown up so fast. I feel like I have missed it.
As always Thanks so much for your prayers and kind words.
Hugs
Paulina, Colin, Andrew, and Alex
Tuesday, April 7, 2009 10:28 AM CDT
Andrew had a very uncomfortable week last week. His stomach was really bothering him. He did not have a bowel movement and we ended up giving him an enema. We got good results but we also got some blood. We are thinking it maybe was a weak blood vessel. We are keeping a close eye on this.
I just do not understand how he can be comfortable with his stomach and then not be. Nothing changes in his diet. We are checking his ph levels at home now. His acid has been really high. We started him back on carafate and he was comfortable by Saturday. He slept most of the day on Saturday, Sunday and yesterday. But today you can tell his stomach is bothering him again. He gets Prontonix twice a day. We are starting to see retention of fluid. He has still been running a low grade fever on and off.
Alex is on Spring Break this week. Too bad it is cold. He and Colin went on his school trip to the Zoo Friday they had a great time even though it was rainy and cold.
I am going to have a procedure done on my back in May. They are going in directly into my tail bone to the disc and apply the steroid directly. I will have a couple of stitches and will be out of commission for 5 day.
As always Thank you for your love and support. Happy Easter!
Colin, Paulina, Andrew, and Alex
Tuesday, March 31, 2009 8:20 AM CDT
Andrew continues to be about the same. He sleeps all the time, which means that he is more peaceful and not in pain. We have had to cut back 4 more ounces out of his feeds last week. It started squirting out of his stoma where it is just sitting in his stomach. We have his continuous feeds set at 65 mls an our. He has gained 2 pounds but they are saying it is fluid. There were a couple days last week that he had a hard time breathing and ran a low grade fever. We thought maybe he was trying to come down with something.
Thank you for all your kind words and prayers. We lost a very dear friend last week in a tragic car crash. She thought the world of Andrew. She left behind a son that is the same age as Andrew. Please say a prayer for her family.
Sunday, March 22, 2009 12:23 AM CDT
Thank you all for your wonderful kind words. The inner struggles sometimes eats you alive. Maybe I can do one more thing to help or why am I doing this how is this going to help. Am I just making him more miserable?!?!
The doctor did come to our house Friday. That was so different. We also had our Hospice clergy, his nurse and his social worker. If Andrew could talk he would of said, "It's a party"!!! Thinking this brought a smile to my face.
We had that conversation that you have in the back of your mind but if you do vocalize it then it is not true. What is this called, oh yes denial! Andrew was unresponsive the whole time but that is how he is anymore. He saw Andrew in November and could not believe the substantial decline in Andrew.
The first thing that he address was the dark fluid that we get back out of his stomach. I had saved some that we had got back that morning for him to look at and give his opinion on. He feels that there is some blood but mostly it is coming from his intestines because they are not functioning like they should anymore. Which goes hand in hand with his stomach not functioning like it should either.
He told us that Andrew would need less and less formula and to let his body guide us. That all we can do now is make him as comfortable as possible. He believes that all Andrew's pain now comes from his digestive system. We have a pain management plan in place now.
They stayed with us for 2 1/2 hours and discussed many things. We also had our talk with Alex. He understands that Andrew is going to heaven, we just have to prepare him the best we can.
Saturday, March 14, 2009 5:55 PM CDT
I wish I could say things are going great for Andrew but I cannot. He continues to slip further away from us. The eye rolling what we thought was seizures is further neurological decline. When he is not in discomfort he is sleeping 20 hours out of the day. At least when he sleeps like this then I know he is not in pain.
He is down to 24 ozs of formula day. We have him on the continuous feeds and the ferral bag to help with pressure in his stomach and intestines. He is really struggling with his bowels. Urine output has decreased also. We have gotten blood back out of his stomach 3 days this week. All we can do is give him carafate for this.
His Hospice doctor wants to see him but he does not want Andrew to travel so he has made time in his schedule to come to our home. He will be here Friday. I am terrified of what he is going to tell us. I cannot imagine my life without Andrew. His little body is so tired of fighting. How do you tell your child that it is OK to go to God?
Saturday, February 21, 2009 9:03 AM CST
Andrew has been in a lot of discomfort this week. His stomach has been giving him so much discomfort. When we are feeding him by his g-tube the formula is coming right back out of his mouth. We had to cut back his feeding from 4 times a day to 3 times a day in hopes that it will bring him some comfort.
We also have increase his Protonix to twice a day to try to get this reflux under control. He had another GI bleed this week. We put him back on the Carafate for this. We had to change his g-tube again the darn thing is still leaking.
He has started a different seizure activity, he will look up and his eyes roll back in his head. He has done this numberous times. It is scary to watch. We have increased his diazpam hoping it will help. He has increased rigidity and tightness. We have increased his baclofen.
Our little man has had to suffer so much. It is sad to watch what he has to endure on a daily basis. As always Thanks for your love, support, and prayers.
Thursday, January 22, 2009 9:12 AM CST
Sorry it has been a while since I last updated. I know I say that every time but it has gotten to the point where I do not like to update. When all you can talk about is the bad things that is going on with your child you kind of think if you do not write or talk about them then maybe they are not reality.
Andrew has been spending most of his time either sleeping or in so much discomfort from his stomach. He had another episode with bleeding from his ulcers. We started giving him Carafate again to calm them down. So far we have not got anymore blood back. We had to cut 8 ounces out of his feeding because he is just not breaking the food down. It is just sitting in his stomach and causing him so much distress.
On the days that he is comfortable he is sleeping about 16 or more hours out of the day. With all the years that we did not get any sleep with him you would think that we would welcome the sleep but we know what this means for his to sleep this much. We are glad that he does have some comfort and is not miserable all the time. We have only noted one seizure since the ones he had on New Years day.
We have been also having G-tube issues. It started back in December; we changed him to a size up on his g-tube. It has been leaking every since. We changed it back to the size he had and have had to change it four times. I hope this one will not leak. We do not know what is causing this problem.
As for the rest of us, Colin lost his dad last week. It has been really hard on him. He has decided to wait to go into the RN program. I finally got my first shot for my ruptured disc. It helped so much. I will be getting my second one next week. Alex is doing extremely well. He is about to loose another took. This will be the third one in a month.
As always Thanks so much for all your prayers. They mean the world to us.
Colin, Paulina, Andrew, and Alex
Thursday, January 1, 2009 5:36 PM CST
Wow, what a way to start the new year. Andrew had a grand-mal seizure this morning. He bit his tongue and has been in the post-ectal state all day. He finally came out about 4:30 p.m. and has been excessively drooling since. It is incredibly scary and we pray that Andrew is not going to endure another difficult year.
He is having difficulty maintaining his balance while in the sitting position. We have to prop him up with alot of pillows. Good thing that Santa brought him a bunch of pillows for Christmas.
Once again Andrew's bowels have been throwing us for a loop. He went three days without and was in tremendous pain trying. After the third day we gave him an enema and were able to get two movements from it. It also seemed to relieve some of his pain. For some reason he has been moaning in his sleep, we do not know if this is related to his seizures or a precursor to them. He has been on his seizure medication for seven years and do not know if they will tinker with his dosage.
As always please pray for Andrew's comfort and thank you for the support.
Colin, Paulina, Andrew, and Alex
Wednesday, December 24, 2008 9:20 AM CST
Thanks to everyone for all your support, prayers, and wisdom. Thanks so much for being our wonderful friends. Wishing each and everyone a Merry Christmas and Happy New Year.
Love,
Colin, Paulina, Andrew, and Alex
Thursday, December 18, 2008 6:42 AM CST
Please pray for Michaela and her family. They just recently found out that she has MPS III B Here is the link to her website. Michaelshope
Andrew did get his bed last Monday!!! We are thrilled. It is so much better for him. It molds to his body. However his stomach has been really bothering him. We have had to cut back on his formula. Since doing this he seems to more comfortable. His little tummy goes through these cycles that it seems that he just cannot tolerate his formula. He spits up, rock with pain, and has horrible bowels movements. We also were getting tons of residual.
He has not had any seizures in the last two weeks but since I am typing this I will probably jinx him.
We are preparing for Christmas, Alex is excited, he is marking the days off of the calendar as they go by. We thank everyone for their support for our family.
Happy Holidays,
Colin, Paulina, Andrew, and Alex
Sunday, December 7, 2008 3:45 PM CST
Andrew has not been doing very well recently. He has had increased seizure activity within the last week. Within a 24 hour period he had three grand-mals. They are difficult to watch, you feel helpless. We wonder how much more Andrew's poor brain can take. It is even more puzzling as to why we are seeing the increase, is it Sanfilippo or is it related to something else going wrong?
His nurse came out to draw some blood to see if it may possibly be an electrolyte imbalance or possibly improper magnesium and calcium. She had a difficult time, she tried both hands and finally was able to get some from his left foot. For some reason his veins kept collapsing, she was able to get some hopefully it will be enough.
Andrew has been sleeping for longer periods and seems to be a pattern. He is sleeping 14 to 16 hours on most days and is somewhat comfortable although the GI issues are recurring. We are unsure if it is the formula or the volume that is causing the discomfort. Going hand in hand with the GI is his bowels. We are still in the process of getting him a Tempur-pedic bed. It has been ongoing for three months. We have had his pediatrician write two different letters for medical necessity. But, we had been told for the last two weeks that the bed was going to be delivered. Colin spoke to the durable goods provider and they told us we needed another letter from his pediatrician. Ironically, tempur-pedic called and said they would be delivering it Monday. We are not holding our breaths.
Alex is doing well and cannot wait until Christmas. His list seems to never end. He provides us with a joy around this time of year. It has been eighteen years since we buried our twins so this time of the year is difficult. It is hard to express joy and have the other side of the spectrum with Andrew not able to enjoy what should be a happy time.
We would like to express our appreciation for the love and support for Andrew and our family.
Tuesday, November 18, 2008 5:48 AM CST
It has seemed like it has gotten really cold so quick. I guess it is time since it is almost December. Where has the year gone? It seems like time flies by anymore. This time of the year is always hard on us, with losing our twins they would be 18th on December 7. Andrew never really enjoying Christmas. He never opened his own gifts and now it is so depressing because there is nothing that you can buy him.
This year also marks one year since sweet Brianna has became an angel. Our life was brought together with Brianna's parents though this horrible disease. We formed a quick and long lasting friendship. Their strength still carries us. We have been truly blessed by them coming into our lives. Thank you for always being there for us.
Now onto Andrew. He has been having more GI issues. He is refluxing and getting choked 2 to 3 times a week sometimes more. We know when we get the bile out of his stomach in the mornings that is an indication that he is going to have a bad day. He has been having grand mal seizures weekly and has been sleeping so much more. Most days he sleeping all but 2 or 3 hours a day.
He is unable to travel anymore. His experience in riding has made us decide not to take him to any appointments unless absolutely necessary. He throws up the entire time. So we will be staying home for Thanksgiving. His bowels are doing pretty good. Unfortunately now they work when we put him in the bathtub. They say that it relaxes his muscles so it is easier on him to go.
I have not worked for a month now. My back still hurts, it is worse down my leg. I went to the neurosurgeon on Friday. They said that my disc is ruptured. I am waiting for them to schedule the Epidural injection. We are hoping they will help. If they do not then I will have to have surgery. The big thing about not having surgery now is that I will not be able to lift, pull, or twist for 3 weeks. I have to care for Andrew so it would be hard.
Colin and Alex are doing wonderful. Colin has been working all the time plus going to school 2 nights a week. He is still waiting to hear if he got into the nursing program. I married such a wonderful man. Alex is getting excited about Christmas. He is carrying all the Christmas catalogs around. It is funny. He wants to go ahead and put up the tree. I told him we would have to wait until Thanksgiving. He goes on his first field trip next week. They are going to Union Terminal in Cincinnati.
We would like to say Thanks to everyone for your love, support, and prayers. We have been blessed with many wonderful friends who we would not know what we would do without.
Thursday, October 30, 2008 10:38 AM CDT
Sorry it has been so long since I update. I do not know where to start. Andrew has been the same. Although he has had much more comfort since we started him on Protonix. I am thank God for that. His kidney appointment really did not give us any surprises. His kidney function is fine. Everything is brain related. His blood pressures has been running good for last couple of days. The kidney doctor wanted to run some of the same test we have had ran on Andrew. They wanted to test his urine which would require him to be catheterized. We decided not to allow these test. We feel that putting him through so much discomfort is not worth it. The only thing that can be done is too decrease his fluid intake; which would cause a lot of problems for him.
I have having lots of problems with my back. It has been bothering me for 5 weeks now. I had an x-ray which showed bone spurs on my spine. I was treated with some pain medicines and steroids which did not help. So I had an MRI last Friday, it showed that I have an herniated disk. I have to go to a Neurologist on the 14th. I cannot even lift Andrew right now. I have been exploring the options on the Internet and I think I might try the epidural injections.
Alex is doing great. He got a great report card. He is ready to go Trick or Treating. He is going to be Obi One Kenobi. He is going to go to Colin's brother house to go with Colin and Chris's children. Andrew and I will be lounging and watching Ghost Hunter's live.
Colin has been working everyday to make up for me not working. He is also still trying to finish this semester at school. He applied to the Nursing program but he has not heard anything yet.
Thanks everyone for stopping by and giving us your love and support. I will try to update sooner.
Love ya
Paulina
Saturday, October 11, 2008 9:07 AM CDT
After our brief hospital stay we found that Andrew kidney's need to be looked at more closely. On Oct 22 he will be have an kidney ultrasound and later in the day he will be going to see a kidney specialist. We talked to them yesterday and they told us this appointment will be two hours long. They want to make sure his kidney are functioning like they are suppose too.
He started protonix yesterday. We are praying that it will offer him some relief from all the stomach problems he has had for years. His blood pressure is still running way to high. Hopefully the kidney doctor can give us some info on what type of medicine he need to bring it down. He spent his birthday have seizures all evening.
My new profile picture was taken last night. Andrew has not had a professional haircut for years. They were just unable to deal with him movements. So I have been giving him a buzz cut at home. He could not stand the sound of the clippers and it would upset him so. So his nurse told me last week that they had a new aide that was also a beautician so she came to our house yesterday and gave him a haircut. I was so emotional. It was like his first haircut all over. He is so handsome.
Thursday, October 9, 2008 7:03 AM CDT
Today Andrew turns 11 years old and tomorrow Alex will be 7. Time such does fly.
Andrew has continued to struggle. He had to go to the ER this weekend because we got blood back out of his stomach. His Renal test were not good. He has to get a kidney ultrasound and go see a kidney doctor.
We still are not sure where the blood came from. His acid in stomach is really high so he will be starting protonix.
Please keep him in your prayers!
Saturday, September 20, 2008 6:21 PM CDT
Andrew is going through some uncomfortable times right now. He is not sleeping very well and his bowels are giving him fits. We try to keep his movements regular but it seems like no matter if we increase his miralax the consistency is just not there. Andrew also seems to have a very difficult time riding in the car anymore. He can not tolerate the movement and ends up throwing up and having loose bowels whenever he rides. Paulina and I have came to the reality that the most comfortable place for Andrew is in his bed. The only time we can get him out will be if he needs to be seen medically. It is just not worth it to make his misery more at any other expense.
We are trying to find a way to get him a bed that is equipped to relieve pressure sores and also enable him to get some quality sleep if possible. I have contacted our insurance and they are willing to pay if we have a prescription form his pediatrician. It seems easy but there are some other loopholes we have to jump through. We have to get the bed from a medical/durable goods provider. I have personally spoken to the local providers and none of them carry the Tempur-pedic bed that we want to get. Every one of them tell us that it would not be covered any way by our insurance and also no providers carry that type of bed. It is becoming very frustrating and upsetting because all we can do for Andrew is to try and keep him comfortable, it seems like our only option is to provide comfort.
I am writing Andrew's journal because Paulina and Alex went to a wedding. Andrew is very uncomfortable but has provided me with a few giggles, they are probably seizures but it makes me smile to hear the sound of his laughter. Thank you to every one for the prayers and the support.
Colin,Paulina,Andrew and Alexander
Sunday, August 31, 2008 3:31 AM CDT
Andrew pneumonia is getting better. He has not been on an antibiotics since Thursday. He has not had a fever which I am very grateful for. His sleep continues to be non-existent. He is not tolerating his feedings again. He is still refluxing bad. We changed his feeding schedule from four times a day to 3 times a day so this is getting him 6 hours in between feedings.
He started taking baclofen for his spasticity. We have started him out on a very low dose to see how he is going to react to it. His blood pressure is still running pretty high. He is taking blood pressure medicine four times a day now.
We are having a Care Conference for him on the 19th of September with all his doctors. Maybe we will be able to figure something out that can help him be more comfortable.
As always thanks so much for your love and support. It means the world to us.
Love PJ
Saturday, August 23, 2008 7:16 AM CDT
What a week this has been. Andrew has had several seizure this week. He had one in the middle of the night Tuesday and apparently he stopped breathing and he woke Colin up gasping for air. He recovered on his own Thank God. He went into a deep sleep and slept for 10 hours.
He has been refluxing really bad on his tube feeding. Now he has aspiration pneumonia in his right lung. His fever jumped up out of nowhere to 103. He is at home and we are treating him with a strong antibiotic Cleocin for 7 days. As long as he does not get any worse we do not have to put him in the hospital.
His cyst removal site looks great. It is completely closed. We are going to have a conference soon on what to do about the SIADH. The way it is looking is that we are not going to be able to do anything.
As always thanks so much for all your support. It means the world to us. It seems like it is always pouring rain at our house and our umbrella is broken. We just have to keep our head up and go on.
God bless
PJ
Sunday, August 17, 2008 3:48 AM CDT
Andrew’s wound continues to improve. It is just a small place now. It is nice and pink. It looks great. However he is still showing discomfort. We think he is starting not to tolerate his formula again. He has been having spitting up episodes and getting the hiccups a lot. We have been venting him more and getting some more bowel back through his g-tube.
We are just watching the SIADH right now. We cannot restrict his fluids. He has had several seizures. We have put him on Diazepam twice a day to help control his seizures along with his seizure medicines. He has not been sleeping. By now you would think we would be used to this. His bowels have been moving well. His urine output is not great but it has to do with the SIADH.
Alex is doing great in school. He went to the Reds game a last week I put pictures of him in the photo album. Him and Andrew have birthdays in a couple of months he has already started planning his party. LOL!
Thanks to everyone for your continued prayers!! Let us know you have been hear by signing Andrew’s guest book.
PJ
Tuesday, August 5, 2008 2:39 PM CDT
Good morning,
Andrew’s wound is looking good. We pack it now that he has burst his stitches. He went for his check-up last Thursday, they said everything looks OK. He goes back in 2 weeks. His pain seems to be a little better. He has his good days and his bad days.
We found out that Andrew has yet another diagnosis. He has SIADH (Syndrome of inappropriate antidiuretic hormone). SIADH is an inability of the body to excrete dilute urine. This occurs when excessive levels of antidiuretic hormones (hormones that help the kidneys, and body, conserve the correct amount of water) are produced. The syndrome causes the body to retain water and certain levels of electrolytes in the blood to fall (such as sodium). SIADH is rare in children.
He is retaining the water intracellular that is why we have not seen any swelling. Usually the way this is treated is to restrict fluids but since he is tube fed they do not feel this would be in Andrew’s best interest. His pain specialist is in the process of finding out more information and is also going to talk to an endocrinologist.
Andrew had a grand mal seizure last night. Today he seems that something is bothering him. Seizures are one of the symptoms of SIADH.
Alex goes back to school on Thursday. He is ready to go back. I cannot believe that he is going to be in the first grade. He is getting so big. I just do not know where the time goes.
I was lifting Andrew yesterday and tore my plantar fascia in my foot. It hurts terribly but I will get better. Colin goes back to school next week. We need to get back into the school routine.
As always Thanks so much for all the support and prayers. Please do not forget to sign the guestbook, we look forward to reading them.
Friday, July 25, 2008 6:56 AM CDT
SAT. JULY 26TH AFTER TYPING THE UPDATE YESTERDAY ANDREW SOMEHOW BURST HIS TOP LAYER OF STITCHES. WE ARE PACKING IT NOW. PLEASE PRAY HE DOES NOT BUST THE OTHER TWO LAYERS.
We are on day 3 since surgery, he has been in a lot of pain. This morning has been the longest since he had pain medicine. He is still sleeping. Hopefully he is turning the corner with the pain. He got to get his first shower yesterday. I bet that made his feel a lot better. It is funny to watch, Colin holds him on a shower chair while I give his a shower. Needless to say everyone is soaking wet by the time we are done.
He is suppose to go back to get his stitches removed in two weeks of his surgery. I called yesterday and they gave me two choices; July 31st and August 26th. I told her that we need to get stitches removed that the 31st was too soon and that August 26 was way to long. She would not budge. So I took the July 31st appointment.
I thoughts that it was amazing that there was nothing in between and that they could not accommodate the two week period. Oh well we will see what his surgeon thinks. We can always have his nurse take them out or go to his pediatrician.
His pediatrician is watching some of his blood levels very closely. He had blood test about three weeks ago that came back abnormal. So his pediatrician order more test to be done while he was out for surgery. I really do not know what they are looking for because no one will tell me. Which is very frustrating.
Alex is doing really well. He is going to start back to school on Aug 7th. I think he is ready to go back. We got tickets to go to the Reds game on August 10 through Adventures for Wish Kids he is excited. He will be able to run the bases after the game. I hope Andrew's butt is better so we will be able to take him.
We want to say Thank you for stopping by and checking, supporting and praying for our family. It means the world to us. Please leave us a note in Andrew's guestbook to let us know you were here.
Wednesday, July 23, 2008 1:14 PM CDT
Andrew's surgery turned out really well for him. The cyst was not real large which was awesome. It is an 1 1/2 long and 1 inch deep. He has three layers of stitches and dura bond. He has been in a lot of pain. He just cannot get comfortable. He is taking Tylenol and oxycodone. He will have to go back in 2 weeks to get his stitches out.
The downside to having a closed procedure is the infection chance increases to 30%. So we have to keep watch to make sure it stays looking good. Of course I was worried about bowel movements. How would I clean the area?? Well today he has had 5 bowelments so we have already got used to it.
Again Thanks so much for your prayers. You all are wonderful. It is great to have wonderful friends that we can count on.
Tuesday, July 22, 2008 3:25 AM CDT
Please keep Andrew in your prayers today. He is going in for surgery at 9:15 this morning. They are going to remove his cyst. I will update when I can.
Monday, July 14, 2008 7:17 PM CDT
We received a call from Andrew's surgeon's office today, they are not going to do his surgery tomorrow. It was be next Tuesday. His surgeon has and emergency surgery so Andrew will have to wait.....
He started running a fever so he has been put back on antibiotics. They did some blood test and check his stool and everything has came back fine. The fever is coming from the cyst.
Today he has been in more pain then he has been. Please keep him in your prayers.
Wednesday, July 9, 2008 8:21 AM CDT
Hello everyone,
Sorry in the delay in updating. We found out last Thursday that Andrew will have surgery to remove his pilonidal cyst. It is scheduled for next Tuesday, the 15th. It has started to flare up again. He is running a low grade temp.
He goes today for his pre-op physical. His movements have decreased since we have taken him off the methadone. He still has some slight movements. His sleep is not very well right now.
We went to King Island yesterday with Adventures for Wish Kids. We had a great time. Andrew did very well. It was great to get to go out and do something as a family. What was really awesome was that it did not cost us anything but gas. Alex was able to get out and have some fun. He rode lots of rides and went swimming.
We got to spend some time with Holly!! I love you sister!! We also spend some time with 3 other MPS families which is always wonderful.
Alex is gearing up to return to school. He starts back on Aug. 6. This summer is flying by.
I would like to say a Big Thank You to our angels who have helped us out tremendously. We are truly blessed to have you all in our lives. Words cannot truly express our gratitude.
Monday, June 30, 2008 5:34 PM CDT
Andrew has had a very tough weekend. It all started Friday when he started having involuntary movements. He would just twist his body and jerk his arms up and down. He would try to stand up even though his legs are not strong enough to hold him up. So we had to stay right on top of him all the time so he would not get hurt. He also started vomiting Friday afternoon and vomited the same time everyday this whole weekend and he also has not been sleeping. What a puzzle. We are thinking it has to do with the medicines he is on.
He just started the diazepam and they also had increased his Methadone. Both are capable of these side effects. So we pulled him off of them today under supervision of his doctors. He goes to his pediatrician tomorrow so they can check on his cyst. It looks really good. On Thursday he goes and see the surgeon, we are hoping they tell us that he does not have to surgery. I will update after we get back from the appointment.
Hope everyone has a great 4th!! GOD BLESS AMERICA!!!
Tuesday, June 24, 2008 7:27 PM CDT
Andrew's cyst is draining. We are still waiting to hear when he will have surgery to have it removed. We have been talking to several doctors about the benefits vs the risk involved by putting him under. They all feel that it will be worth the risk. It can keep the infection and continue to flare up. So we do not want to have to keep him on antibiotics all the time. He is still on an antibiotic. They will keep him on one until he has his surgery.
Yesterday, he had 5 grand mal seizures. We had to use diastat on the last one. It lasted 35 minutes. It has been decided to put him on a very low dose of diazepam for the next 5 days. They feel that the infection and low grade fever are lowering his seizure threshold. He slept really good today and has been very comfortable.
Alex is still enjoying his summer. We are going to try to take him to the zoo. He is such a trooper. He told me today that it makes him sad to see Andrew in pain. He is going to be a wonderful man someday....
As always THANKS so much for stopping by and checking on Andrew. Your love and prayers means the world to us.
Friday, June 20, 2008 7:11 PM CDT
Andrew is home!! Thanks to everyone for your prayers, love and your experiences. His pain is much more controlled now the infection is clearing up. The cyst opened up on it own today so he did not have to have it lanced. He is on an antibiotic for the next two weeks. We have to go to his pediatrician on Monday so they can check it. We are waiting to hear from his surgeon to see when he will have to have surgery we are hoping to hear Monday. I am not crazy about this but it has to be done.
Wednesday, June 18, 2008 7:51 PM CDT
Well we have a source of pain for Andrew but they do not feel that it is the only source! He has a Pilonidal Cyst/Sinus. A pilonidal cyst is a cyst at the bottom of the tailbone that can become infected and filled with pus. Once infected, the technical term is pilonidal abscess. Pilonidal abscesses look like a large pimple at the bottom of the tailbone, just above the crack of the buttocks. Treatment consists of antibiotics if the area is infected. After the infection is cleared, a day surgery procedure to remove the cyst is performed. The cyst may be a simple abscess or may be draining from sinus tracts that need to be closed. The process of raising the borders of the emptied cyst and stitching them to form a pouch is called marsupialization. The interior of the pouch then empties the collection of pus and gradually closes. Several weeks of packing the pouch with gauze is needed to collect the pus while the pouch closes.
Here is the thing he has always had a Sacral Dimple. They first started looking at Tethered Cord so they did an ultra sound and have ruled it out. They have him on Methadone and Oxycodone. So far they have not given him any relief. They have him on Cefazolin for the infection. They cannot do surgery until the infection is gone. They did and echo today also.
He is in room 601 at Cincinnati childrens hospital. Keep him in your prayers.
Wednesday, June 18, 2008 5:38 AM CDT
I wanted to give a quick update. Andrew is in the hosptial. They put him in yesterday to find the source of his pain. His pain is out of control. He is crying with so much pain. His blood pressure has been extremely high.
They have done a shunt series and tapped his shunt. It is working fine. They also did and ultrasound of all his organs and his spine. He had tons of blood work and urine test.
I will update when I know more.
Friday, June 6, 2008 3:45 AM CDT
Good morning everyone,
I wanted to give an update on Andrew. He has gained two more pounds bringing the total up to a four pound gain in weigh since being on the Resource for Kids. He still has discomfort coming from somewhere. We believe it is coming for the abdominal area but so far can not figure what to do to help.
We went to Neurology last week, no new information there. We had to take him to his pediatrician. His blood pressure is running high. We wanted to get him checked out to make sure we were not missing something like ear infection, dental, or something of that sort. Everything appears to be ok in all those areas.
His blood pressures have been running around 130/105 and sometimes higher. The bottom number has not dropped below 100 in the last three days. He did increase his clonidine to 3 times a day to see if it would lower his blood pressure. He also did blood & urine work, CBC, Complete Metabolic Panel w/eGFR, Amylase, and Lipase. Just waiting to hear back for the results.
Alex is out of school now and enjoying his break. Colin's dad had a stoke today, it is pretty serious. He had bleeding on the brain. Please keep him in your prayers.
Tuesday, May 27, 2008 1:08 PM CDT
Hope everyone had a great weekend. Ours was a very interesting one. We got the call on Wednesday that they were going to place a J-tube in Andrew on Friday it was a horrible experience. They had a hard time getting it in we had to hold him down for 1 1/2 hours. Then after we got home he rock with pain. It continued into the next day. He started giving a bile back and having diarrhea which is a sign that he was not tolerating the j.
The bile would come out every time you would open his button. I called and we went back to the hospital on Saturday and they removed the J-tube and put back in his g-tube upon our request. It is believe that it had came out of his intestines. If it comes out that easy there is no way we can go up their every day and have it put back in. We had the rate for the pump set on 70 mls an hour, at this rate it was going to take 24 hours to pump into him what he would need. This means that he would never come off the pump. He could not stand being hooked up. They also said that he was not tolerating the rate. If we did it any lower than 70 he would not get enough calories. So we decided that we wanted the G-tube back in at least we know he will be getting his nutrition. One good thing is that we found out he had gained 2 pounds!!
We went to my sister's house on Sunday for a cookout after I got off work. We had fun. Andrew seemed to enjoy it also. The picture was taken Sunday. We also went to Christian and Cody's grave. Alex did better this time. We are going to see Andrew's neurologist on Wednesday hoping to get some answers on why has had increase seizure activity.
As always Thanks so much for stopping by.
Thursday, May 22, 2008 12:11 AM CDT
We had a Gastric Emptying scan on Monday we got the results yesterday. He still has moderate reflux even taking medicine twice a day. Of course this put him in high risk for aspiration. I can only imagine the pain this is causing him. His emptying is slow which we knew his first hour he was only at 28 hen he jumped up to 53 or the second hour which was a little better. So they are going to put an extension on his G-tube tomorrow and place it in his intestines, bypassing the stomach with his feeding since he did not respond to the medicines they use to treat Gastroparesis or reflux.
We have also seen a increase in seizure activity. He has been having grand mal seizures more frequently. They are the most scary things to watch. We are going to see his neurologist next Wednesday. They have increased his seizure medicine. They also found a cyst in his sinus area. We are trying an antibiotic to see if it breaks it up. We will have to have another CT scan or x-ray to determine if it has. If not I have no idea what they are going to do next.
Have a nice safe holiday weekend.
Wednesday, May 14, 2008 10:11 AM CDT
We have our appointment for Andrew's Gastric Emptying Scan. It will be Monday, May 19th at 1:00pm. I pray that we are able to figure why Andrew stomach bother's him so much. He continues to struggle with the new formula. He has not gained any weight. He also has started Omncef for the cyst that is in his sinuses.
Thanks for keeping him in thoughts and prayers!!
Saturday, May 10, 2008 12:33 AM CDT
So far the new formula has not help Andrew. We called all week to see when the stomach emptying scan was going to be. We got a call last night about 5:30 pm after we had call them 5 times that just said they just got the order!!! What did they forget to order the test!! We were at the hospital Tuesday!! These people make me so mad. It is like they just do not care how much suffering Andrew has to go through.
I did talk to Andrew pediatrician and he put him on Omincef to see if it would clear up the cyst in Andrew's sinus. Andrew will be taking it for two weeks and then he will have another CT scan or x-ray of his sinus. We changed his feeding tube last night. They all increased his pain medicines to 3 x a day.
Alex is doing great. He only has a couple of weeks left of school. I know he cannot wait to be out for the summer. Colin has two finals this week and one of his summer classes starts. He is taking 2 classes online this summer so he will be home. YAY!!!
HAPPY MOTHER'S DAY
Thursday, May 8, 2008 9:51 AM CDT
HAPPY MOTHER'S DAY TO ALL THE WONDERFUL MOTHER'S I KNOW AND TO THE MOTHER'S THAT HAVE TO CELEBRATE THIS DAY WITHOUT THEIR WONDERFUL, BEAUTIFUL CHILDREN MY THOUGHTS AND PRAYERS ARE WITH YOU!!
What a long day Monday was. Have we got answers yet?? Maybe, but it is not what we want to hear and it was something we already suspected. Our appointment for the feeding team/GI doctor was at 8:30, we got out of that room at 10:00. So what is going on with our little man, his MOTILITY is getting worse!!! Things are not moving through for Andrew so it is just sitting in his stomach and in his intestines and backing up. So the first thing that is being done is they changed his formula, because the weight loss. The formula, Resource for Kids has more calories per ounce so hopefully he will accept it. We started it Monday and so far he has not been tolerating it well. He is spitting it up and having really liquid bowel movements worse than normal. We will see have to see how the next couple of days goes. It is a shock to his system because with the Elecare he did not have to break anything down.
He also has to have another Gastric empting scan done. We are waiting for them to let us know when this will be. He has this test done 2 years ago and it showed that his stomach was delayed in empting. Things have gotten a lot worse since then. With us getting bile back it is showing that everything is backing up. This is more than likely brain related. Depending what this test shows, we might have to bypass his stomach and move his feeding tube into his intestines.
We also saw Neurosurgery, which we got good news and some surprise news. First the good news Andrew's shunt is working well and his last CT Scan (March 4, this date is important when you see the surprised news) showed that his 4th Ventricle appears more normal in size but there has been no significant change in mild to moderate lateral and third ventricular enlargement. Now on to the surprise news she asked if anyone was treating Andrew's large left maxillary sinus mucus retention cyst. Here is the exact wording from his scan report which I got a copy of while we were there: There is a large left maxillary sinus mucus retention cyst with moderate bilateral ethmoid and right sphenoid sinus disease. Soft tissue extends into the frontoethmoid regions, but sinuses are not well aerated. We were stunned. It had been over a month since this scan was taken in the ER and no one has even told us about it. He had a Ct scan last November and as far as I know it was not there than. We are waiting to hear back from his pediatrician to see what we need to do about it.
As always Thanks so much for checking in on us. I will update as soon as I know more.
Friday, May 2, 2008 2:58 AM CDT
Well we went to the pain doctors appointment last Friday and it went well. The doctor is the director of the pediatric palliative and comfort care program at Children's hospital. He is a pediatrician and also anesthesiologist. So I feel we have made a wise decision by going to this appointment. We were full of question for him. He spent about 2 hours with us. Andrew's nurse came to the appointment with us. It is always good to have another pair of ears.
With Andrew being non-verbal it is hard to pin-point the exact source or sources of pain. I feel that his pain probably comes from more than one source. He was started on a low dose of Morphine a couple of weeks ago, it seems to help with his comfort some but it is short lived. I also feel due to his slow stomach/absorption issues it takes longer to get into his system. If we give him it say today we will see more of the effects of it tomorrow. So he needs something that would stay in his system longer so we have been trying a very low dose of Methadone. He has been taking a low dose of this for a week now. I have not seen any difference than the week he was only taking the Morphine. We want to make sure we do not make him to the point where he is just drugged up and sleeps all the time so we are taking this very slowly.
Now for the second and the most difficult and important issue, nutrition. We go to his GI doctor on Tuesday May 6. This appointment cannot come soon enough. He continues to have many problems with spitting up, having lots of residual, and having discolored residual. It has ranged from yellow, green, and brown. We also need to know why he continues to lose weight. He has not had any decrease in calories and I have tried everything trying to see the best way to feed him and him tolerate his feeds.
We had a private dedication ceremony for Andrew on Friday after. Thank you Billy, Judy, and Nancy, you all mean the world to us. God has blessed our life with Andrew.
Alex continues to thrive. He is doing so well in school I cannot believe my baby will be in first grade!! He and I went on his school field trip to a play in Louisville. The play was If you Give a Pig a Party. It was awesome!! We had such a good time. They stopped at General Butler State Park on the way back to have lunch and play. He has about a couple of weeks of school left and he will be on summer break. Colin is going into finals week at his school. So he will be studying all the time.
Thanks so much for the prayers and stopping by.
Paulina, Colin, Andrew, and Alex
Tuesday, April 22, 2008 6:15 PM CDT
Andrew continues to struggle. He rocks, cries, grimaces which tells me that he is in so much discomfort. We have tried everything with his feedings and cannot make him comfortable. We had an abdominal x-ray last night. It turned out okay. He has spit up today with all his feeding. We have an appointment this Friday with the pain team hopefully they will be able to offer him some help. He was started on Roxinal this weekend for some pain management. So far it has not offered him any comfort. We also have neurosurgery appointment and feeding team/GI appointments coming up over the next couple of weeks. I pray they are able to offer some help for him.
He has lost another pound, he is down to 63 pounds. It is breaking my heart that I cannot find anything to help him. I know they are thinking it is brain/neurological related. But I truly believe that his stomach is bothering him also. We are getting bowel movements but we are wondering if he is still not getting everything out but I guess he is or it would of showed up on his x-ray. We also think that he may be having trapped air in his intestines. We are giving him gas drops but it is not helping. He was started on Bentyl but it has not helped either. He has been on Reglan which has not helped at all so we took him off because if the drooling issues it was causing.
We have also tried continuous feeds, but he still shows discomfort and we are at a loss to help Andrew. How do we determine his pain and figure out feeding him without pain. What are our options and where are we heading? We just want Andrew to be without pain. He is and has suffered enough, how much do these children have to endure? His Hospice nurse Nancy has been wonderful and patient with us. What a blessing she is. She started with us about a month ago and she had to come in fighting for little man.
As always Thank you for stopping by and checking on Andrew. He truly needs prayers right now. I will update when I know more.
Sunday, April 6, 2008 3:17 AM CDT
Andrew is not tolerating his feeds. We knew he was heading down this path, we have been seeing signs. Spitting up, lots of residual, and stomach discomfort. The reglan does not seem to be helping. With the reglan we also have seen increase in his salvia again. We also have started him back on Carafate because he is having a small GI bleed again.
We are starting continues feeds for Andrew since he has not been tolerating his bolus. We have to increase his calorie intake because he has lost more weight. He is down to 64 pounds. When we started the new formula they set his calorie intake but it is not working. We are praying that he needs more calories instead of him not being able to absorb his nutrition. Please keep him in your prayers.
Tuesday, April 1, 2008 5:31 PM CDT
Hello everyone! Things continue to go down hill for Andrew. His bowels are moving but his stomach is not wanting to empty out. It is causing him so much discomfort again. We are getting a lot of residual. He was in so much discomfort last night I emptied his stomach out. We decided to skip his feeding last night and gave him pedialyte. We had to start him back on Reglan today. He has to have his nutrition I'm going to try to keep him on the lowest dose possible. Because the last time we used it, he started to drool like he was hooked up to a water line.
He had some more seizures last night they were peti mals. He did not lose consciousness. His heart rate went up and so did his respirations. He has gotten to the point where he cannot sit up. He wants to just lay. So I have been putting him in his Soft-touch sitter for sit-up time. When we put him on the couch he slides off and just lays in the floor. It is so heart breaking!! I hate MPS!! I hate what it is doing to my son and the rest of the children who have to suffer. Please keep him in your prayers.
Please pray for Jasmin, she has MPS III also. She lives in England. She is in the hospital battling pneumonia. http://www.caringbridge.org/hi/jasminmay/
Thursday, March 20, 2008 8:46 AM CDT
I know it has been several weeks since my last update I apologize! I want to wish everyone a blessed Easter! We are planning to go to my sister house for supper on Easter and have a egg hunt for Alex.
Not much has changed with Andrew. We are trying to stay on top of the bowels to keep them flowing. He was doing good with them until yesterday. I hope today bring many bowel movements. We started him on infant gas drops last week and it has seemed to help him. He still has pain when he is trying to have a bowel movement. So far he has not had anymore major seizures for 2 weeks now just peti mal seizures. He has been some good nights sleeping and some bad ones still.
Alex is doing very well in school! He just got his report card and got all 4's, which is above what he should be doing! We are so proud of him. He cannot wait until it warms up so he can get outside and play.
As always Thanks so much for stopping in and checking in on Andrew.
Wednesday, March 5, 2008 4:33 PM CST
I cannot wait till spring. Winter has not been good for Andrew. No, it has not bee the weather it has been his disease and how it is affecting his brain. I want some sunshine. The last two weeks have been especially hard. Last week he was in so much pain and we could not figure out why. He was giving us some bowel movements but apparently it was not enough. By midweek he was doing so much rocking that you could tell that his stomach was the source of the problem.
We gave him an enema hoping it would help him go. I gave us a little. He takes Miralax everyday we thought that maybe he had something else going on. We contacted his doctor who said to give him another enema and use the phospho soda. We were scared to use the soda because the last time it took everything out of him and it took a while to get him hydrated again. However knowing how much discomfort he was in we did it. It also did not produce the desire affect. We had to take him in and get a x-ray while showed that he was really full of poop. So the plan was to start him on magnesium citrate and two enemas until he has a bowel movement. We got through one day of this with him not giving us anything so we made an appointment to take him in. His stomach was hard and distended so he was admitted to the hospital. He was at St Luke which is a little closer to our home than going to Cincinnati. They were wonderful to Andrew. He had some amazing nurses.
He was started on GoLytely there and put on an IV for dehydration. He stayed over night and it seem to do the trick. He had come to the conclusion that Andrew has an ileus, the probable explanation is imbalance in the regulation of colonic motor activity by the autonomic nervous system. Which we did not want to hear. Our plan is to increase his Miralax and start him on Amitiza. It is used for the treatment of idiopathic (i.e., due to an unknown cause), chronic constipation. Even thought he is giving us some bowel movements he is not emptying everything out. So we need to help him more.
Well Sunday night things started changing a little. Andrew woke Colin up falling out of bed (which is a mattress on the floor) and when Colin picked him up it was apparent that he had a seizure. He was looking wildly and stiff. It only last a minute so Colin put him back to bed. Monday seemed uneventful, Andrew got up early had 8 bowel movements and was doing pretty well.
About 4 am Tuesday morning Andrew woke up Colin shaking the bed he was having a tonic-clonic seizure. Colin started yelling for me, I was in the next room asleep. At first I thought I was dreaming but finally I woke up and came running what I saw I could not believe. It appear that Colin was doing CPR on Andrew. I ran for the light and Colin said he was having a seizure and he thought he was losing him. He had stopped shaking, I tried to pick up Andrew but he was as stiff as a board and he was looking around wildly. It was like he was awake but was not here with us. This lasted about 15 minutes and he feel asleep. We put oxygen on him and watched him for a bit.
We thought we were out of the woods so Colin laid back down with him and I got on the computer to research the new medicine he had just started. The next thing I know Colin is yelling for me again and I came running. I could not believe what I was seeing. He has had seizures before but nothing like this. His body was straight and stiff, he was shaking from head to toes and his face, I will never forget his face, it was all scrunched up and look so hard. I grabbed the diastat and proceeded to give it to him. About 3 minutes later he was as still as he could be. His jaws stayed locked. We called his nurse who was here by 6 am. He continued to have 3 more but they were not near as bad as the first two.
We went to the ER the check his shunt with a CT scan, and shunt series which came back fine. They also did blood and urine test which also came back fine. They could not fine anything that may have cause Andrew's increase in seizure activity. Which means it is probably disease related. Have I told you how much MPS sucks. Andrew slept the whole time we were at the ER and sleep all evening and all night. The seizures and the diastat took there toll on him. Today he has been very unsteady while sitting and he still is quite tired. I have been scare because Colin worked. I will never get those images out of my head. Last night all I dreamed about was him having seizures. I got up about 5 times to check on him. I do not think Colin slept much either. I just do not know how much his brain can take. Thanks so much for your prayers.
Saturday, February 23, 2008 10:57 AM CST
It has been several weeks since I have update. We have been having the winter blahs!! Andrew has been in a lot of discomfort again. His reflux and his bowels are bothering him. When we first started the Elecare it was amazing, he was so comfortable and his bowels were working amazingly. But for some reason the Elecare is not having the same effect on him. Nothing else has changed so we do not know why he is so uncomfortable again.
He had another seizure last Sunday. It did not last as long as the first. It lasted for about 1 ½ minutes. He did the same as the last, he started laughing, throwing up and shaking. Then he falls sound asleep. We did increase his seizure medicine so hopefully it will start controlling the seizures better. His sleep is horrible again. We started giving him Tylenol every night to see if it would help, it has not. We also started him back on Carafate at night hoping it will help ease some stomach pain so he can sleep. So far we have not seen any improvement.
We have given Andrew the nickname of Rolie Pollie Ollie. The reason being is that he cannot sit without rolling over into a laying position. He has lost 4 pounds in two weeks. We are weighing him every week now to make sure he does not lose more.
Alex is doing very well. He has been excited because he has had several snow days in February!! I told him not to be too excited because they will have to make the days up in May. They start school the first week of August so they are supposed to get out early May. We shall see when they get out now or if they make up the days on their spring break. He continues to do great in school. His teacher is leaving so they are getting a new teacher I thought he would have a hard time with this but he is ok with it.
Colin and I are also doing pretty good. The doctors want to take Colin’s tonsils out but he is older so the recovery time is longer. So we are trying to decide a good time to do this since he will be out for two weeks or more. As always Thanks so much for stopping by and checking in on us. Please remember the MPS/ML families in your prayers, the winter months are so hard on the children. Also thank you to all the ones that ordered from Izzy’s foundation Pamper Chef fundraiser they raised over $1200 for their foundation.
Wednesday, February 6, 2008 8:57 AM CST
Andrew had his first grand mal seizure Monday night. About 8:30pm he was getting his feeding and he started laughing. We were shocked because we have not heard him laugh while he is awake in a very long time. He has been laughing in his sleep some, so I am wondering if this is going to be his aura. So we thought this was the most wonderful thing. So we finished his feeding and gave him a bath. He was fine.
About 9pm I heard him vomiting, it was just projecting out of his mouth. So I got him down on the floor to so I could lean him over to help him clear his mouth. Next thing we know his eyes started rolling, he turned blue, and his nail beds were so blue they looked like they were luminated. He got really clammy. Then his muscles started contracting. This lasted for about 3 to 4 minutes then he started to vomit again. Then he passed out in the floor.
By 9:30 his color was coming back. He was so wiped out by it. Yesterday he had recovered. It was the scariest thing I have ever seen. We are having oxygen delivered today just in case. We are an hour away from Children’s so I know I will feel much better to have it here.
Wednesday, January 16, 2008 7:07 AM CST
Hello everyone!!
Andrew is still doing well on Elecare. It has been amazing the difference we have seen in his stomach discomfort. We had to start him back on Miralax, but only a 1/2 of capful. The unflavored has more Iron than the Vanilla so that has affected his bowels. We are going to get him back on the Vanilla formula. His walking is gone now, he does not even try anymore. It is very sad to see but he is much safer. His sleep has been all over the place. Some nights he sleeps well and other he does not.
Alex was chosen for the "Student of the Nine" weeks at school. We had a special lunch with his teacher and the principle. He was so shy. He was chosen based on his academic success! Way to Go Alex!!!! He is doing really well.
Thanks for stopping by and checking in on us. Please remember our MPS/ML families in your prayers. We have lost several children and many are having a lot of problems.
Tuesday, January 1, 2008 8:00 AM CST
HAPPY NEW YEAR!!
WOW, did this year fly by!! We want to Thank everyone for all the love and support that everyone has shown my family. Praying everyone has a happy and healthy 2008. Also praying that we can find a treatment for MPS III and ML.
Andrew continues to do well on the new formula. It has been amazing the difference it has made.
We had a wonderful Christmas. My family came to our house and we ate, ate, and ate. We had to get Andrew up, he was a trooper. He did great, he handle the crowd of people pretty well. As long as no one turned his TV off his favorite Little bear. : )
Alex had a blast. He is the youngest so he was aggravated to no end by all the teenagers and adults. He was not complaining he went back for more. He was worn out by the end of the day.
I'm putting up new photo's in the photo album. Thanks for stopping by!!
Saturday, December 22, 2007 10:04 AM CST
MERRY CHRISTMAS EVERYONE!!
Thank you to everyone for thinking and praying for Andrew. We wish you a joyous Holiday season.
Andrew continues to do really well. He has only had a slight problem with the new formula. We were sent formula with Iron, so his bowels movement have slowed down. But the discomfort level is no where near what it had been. We have put him back on Miralax until we can get formula without iron.
We are gearing up for Christmas. My family will come over on Christmas day. There will be about 25 people. Alex is looking forward to it. His last day of school was Wednesday. He had his Christmas party, it was a blast. I have posted some pictures in the album.
Colin is finished with school for the semester. He ended up with all A's again. He made the Dean's List!!! Way to go DADDY!! He starts back in January. My back is doing better. I pulled it out a couple of weeks ago lifting Andrew.
Tuesday, December 11, 2007 9:12 AM CST
I'm very happy to report that Andrew is feeling much better. We started him on Elecare last Friday and he has tolerated it very well. It is an amino acid-based formula. It does not contain milk protein, fructose, galactose, lactose, gluten, or soy protein. It is indicated for the nutritional management of protein maldigestion, malabsorption, severe food allergies, short-bowel syndrome, eosinophilic disorders, GI tract impairment, or other conditions in which an elemental diet is required. It can be used for oral or tube feeding.
He is doing awesome on it. He is not spitting up at all. He is still rocking some but nothing compared to what he was doing. He is sleeping so much better. We have not had to give him any miralax since last Thursday!! I have not seen so much poop in a very long time. After his first feeding on Friday he had poop everywhere. Not diarrhea but MPS poop!! Everyday now he is having lots of poop!!! He is so much more content!!
We went to Brianna's viewing and funeral. She was beautiful and perfect. My heart goes out to Holly, Brian, Mackenzie and Carter and the rest of their family. They are a very special family to us. I wish I could take away their pain.
Alex is doing very well also. He is very excited about Christmas. He has a calendar on the frig and is marking off the days. Colin has one more algebra class and he is done for this semester. Thanks to all our wonderful friends and family, with you by our side anything is possible.
Thursday, December 6, 2007 6:44 AM CST
^^BRIANNA MICHELE BAYS^^
Here is the information for Brianna's Funeral services.
Schindewolf-Stevens-Stout Funeral Home
200 E. Columbus Street
Kenton, Ohio 43326-1582
419-673-2121
Showing Friday 12/7/07 3pm-8pm
Funeral Saturday 12/08/07 @11:30am
It is with a very heavy heart that I have to tell you that Sweet Angel Brianna when to fly with the angels around 2:30 this morning. She made her journey home peacefully in her sleep. She is the daughter of Brian and Holly Bays and big sister to Carter and Mackenzie.
Sweet baby girl we will miss you! Your beautiful smile will light of the heavens! We love you!!
Wednesday, December 5, 2007 7:23 AM CST
Andrew is not doing any better. On Saturday he got so bad that I put him back on Ensure Plus. He just could not handle the richer formula. His drool is like he has been hooked up to a water line. He was not drooling this bad before we started the Reglan. I decided to research Reglan some more. One of the side effects was drooling. I decided to take him off of it to see if his drooling improved. Sunday was about the same.
On Monday I gave him his fed at 8:30 and he could not hold any of it down. He just kept spitting it up. Rocking and bending double in pain. He is doing this all day and night. I bet he spit up at least 4 0z. He also has started diarrhea again. He has had 5 bowel loose movements today. I call the Nutritionist on Monday, she is out sick. So another nutritionist called me back and said to take him off all formula until tomorrow. We wanted to give his stomach a rest. So we gave him pedialyte only for 24 hours. . He still has shown a lot of discomfort but he did not spit up the pedialyte. He did not show any comfort until 11 hours after his feed on Monday.
On Tuesday we started giving him 4oz of ensure plus 4 0z of pedialyte. He showed a little discomfort but he slept until 11:30. At 12:30 I gave him his fed and then the rocking and spitting up started. I think he needs more time between feds. I gave him 4 oz of Ensure plus with 4 oz of pedialyte. He was uncomfortable for the rest of the day. His nurse came down for his 4:30 fed. She was able to see how uncomfortable he gets. The good news is that he did not drool yesterday, so this leads me to believe that the Reglan was causing it to be so much worst however the bad news is that his tongue is protruding out of his mouth. I do not know if we have his mouth to day. Hopefully it will be better today. I cut him back on the robinul to see if it will help.
We did not hear from his GI doctor or his nutritionist. I had called genetics Monday and they call back yesterday afternoon. I asked them to call Dr. Wrath and Dr. Munezer to see if other children have had similar experience where the medicines are not helping and what they did for them. Of course there probably will not be an answer. I just do not know what to do for him. It seems that the doctors are just dragging their feet. We have been telling them for months that Andrew's stomach is bothering him. It is getting worse and worse. It is so heartbreaking to see your child in pain and not be able to do anything about it. Praying today will bring answers and some relief for Andrew.
Friday, November 30, 2007 9:30 AM CST
So far Andrew has not done very well with the new formula. In fact he is not tolerating it at all. The thinking is that he just cannot handle the volume in his stomach. I just do not know. He had nothing but diarrhea and spiting up yesterday. Last night we cut him back to 4 oz of nutren and 1 oz of water every 4 hours. Good thing this formula has more calories.
We are leaning toward not having the surgery to cut out his salvia glands. We feel this is just to extreme when we just started the Robinal. We still are on a very small dose. We know children that take the Robinal and do fine.
We thank you so much for the prayers and support. People are asking what they can do to help, Please continue to pray for Andrew and we also are still having a hard time with our finances. We are working as much as possible but we just cannot get out of this huge hole.
Thursday, November 29, 2007 12:50 AM CST
Andrew continues to struggle with his GI issues. We were with the doctor for over 2 hours yesterday. His stomach is not contacting like it should so it is not digesting his food as it should. They are hoping the Reglan will start to help him. So far it has not.
They put him on Nutren 2.0 which is a formula that has a higher calorie intake at a lower volume. They said that they might have to bypass his stomach with his feeding tube and go straight to his intestines (G-J tube). This would mean he would have to be hookup to continuous feeds. Which will be a big challenge for him.
His secretions are coming out like a faucet. They want us to take him to a ENT (December 18th) to talk about having surgery to remove the salivary gland tissue or Botox injections. Not sure how we feel about either. I'm researching to see what I can find.
As always thanks for the continued prayers.
Tuesday, November 20, 2007 8:01 AM CST
UPDATE: Andrew started running a fever so we have him back on antibiotics. We also have changed his reflux medicine and have started him on the robinal.
HAPPY THANKSGIVING EVERYONE!! We will be spending Thanksgiving at home. Andrew is just to fragile to take out. I guess I better get my chef hat out. It sounds like Thursday is going to be nasty anyway.
Andrew is not doing well at all. He still has a lot of congestion in his upper respiratory system. His lungs are good right now. So far he has not started running a fever again. His reflux is out of control. His reflux medicine is not helping anymore. He is getting choked a lot from it coming back up and spitting up frequently. He choked so bad last Thursday we had to got to the ER with him. His nail beds and fingers turned blue. They gave him a chest x-ray which came back ok. His nurse checked his lungs again yesterday and they sounded clear.
He is not tolerating his feeds anymore. We have been trying different things but he is not comfortable at all. He will not tolerate being hooked up to the feeding pump. We have to put him in his wheelchair because he get himself wrapped up in the tubing and we do not want him to pull out his g-tube again. We tried feeding him every two hours to see if it would help with his comfort level but it did not. So the next plan of action was to try a medicine that will help him empty his stomach quicker. We started him on it Sunday. He seems to do a little better but then yesterday he spit up a lot of his feeds. I discussed with his nurse yesterday about the possibility of his reflux medicine not working anymore. So that will be the next step to try something different. We also have a prescription for robinal to help dry up his salvia, he is also choking on it. We are waiting to start it because Andrew has a lot of side effects to medicines so we want to make sure he is not going to have a reaction before we give him something else new.
Alex, Colin, and I are doing the best we can. Of course Alex is getting excited over Christmas. If it was not for him we probably would not even put up a Christmas tree. I get really sad this time of year. Our twin sons would be 17 on December 7th and watching Andrew lose his battle with Sanfilippo it is just hard. Alex is our strength. Thank you God for sending him to us. Do not take me wrong I'm very thankful each day I have with Andrew. However the pain sometimes is horrendous.
Life is getting pretty tough. The decisions that we have to make to ensure Andrew a better quality of life. It is heartbreaking to watch him suffer so. Thank you for stopping by and checking in on Andrew. We appreciate the love, prayers and support.
Friday, November 9, 2007 7:55 AM CST
Sorry for the delay in the update but Andrew has been really sick. He has had a upper respiratory infection. We have not had one in years. : ( He ran a fever and his doctor gave him Ominicef. Of course being the child that Andrew has been, he had a reaction to the medication. He developed severe stomach pain, swelling of his face and constipation. So we had to switch out his antibiotic to a different one. Now he has developed diarrhea. He not sleeping at all at night. His ulcers are not bleeding anymore. However he is still having a lot of stomach discomfort. We are taking him to the doctor today. I will update again later.
He was not able to attend the benefit that was given in his honor. Alex and I went for a little while. It was a wonderful turnout. We would like to Thank everyone from the bottom of our heart. What wonderful friends we have. We want to say a Special Thank you to Niki and Jessica!!!
Friday, November 2, 2007 10:18 AM CDT
Sorry Leslie, no pictures of me in the Thomas costume. : ) I let Colin update for me and look what he has gotten me into. Alex did not go Trick or Treating because he got sick. He has had a horrible upper respiratory infection. He has missed the whole week of school. We are hoping to get him back in school on Monday.
Andrew's ulcers are bleeding again. Can he ever catch a break. He started back on Carafate to help coat the stomach for ten day. He rarely walks now. He will try a couple times a day but we have to be right beside him or he will fall. He is choking more on his salvia. We might have to give him something to help dry his mouth out. We do not want him to aspirate on his salvia. He is drooling a whole lot more.
His blood pressure has been up and down. We finally have his bowels going again. He is back up to a capful of Miralax a day. His sleep is still horrible. He is sitting up and laying down all night.
We went to his Neurosurgeon on Monday. His ventricles are stable. They have gotten smaller since pre-shunt. Which is great news. He does not have to go back for 6 months, however she feels that he needs to go to his neurologist to see what is going on with the weakness in the right side of his body. He has had this for a while. She said he should have a MRI but I just do not feel we should do this with his risk of being put to sleep. Besides what can they do to help. They cannot stop his regression.
As always Thank you for stopping by and checking on Andrew and my family. Please leave us a note in Andrew's guestbook we enjoy reading them.
Friday, October 26, 2007 7:29 PM CDT
Hello everyone,
Another week and Andrew is still having issues with his blood pressure. His doctors do not feel like it is high enough to cause damage to his heart or kidneys yet or high enough to cause a stroke. They increased his Clonidine a week ago. However we have only seen a change in his bowels. He is having problems with constipation. We do not know if it is linked to the increase in his blood pressure medicine. It becomes a catch 22. Andrew is still having sleeping issues, we think it is due to his bowel problems.
Andrew has a CT Scan and a neurosurgery appointment on the 30th. It has been a year since his shunt placement. It will be interesting to see if his ventricles have reduced or remained in size. We know that Sanfilippo children do not suffer from Hydrocephalus.......: ) Hopefully some guidance will come out of both off those. Optimism not is a belief in our house.
Halloween is approaching and Alex has decided that he does not to go. That is OK, it never has been a favorite holiday. Andrew was always scared and Alex is following in his footsteps. That means less candy for me to eat. Paulina is going to look cute in that Thomas the tank engine costume that Alex got. Alex is doing great in school. He is far exceeding the expectations of kindergarten.
Andrew continues to struggle walking, which he does very little. We can not turn our backs because he sometimes thinks he is still capable.
Thanks everyone for checking in and thank you to our guardian angels.
Colin
Thursday, October 18, 2007 11:33 AM CDT
Hello everyone,
Sorry it has been a bit since I updated. Andrew has been keeping us on our toes. Even thought he cannot walk without something with him, he still tries. So we pretty much have to stay on top of him. We do not want him to fall and hit is head or break something.
We started having more seizures early in the month so his seizure medicine was increased. Well his blood pressure tends to run high, he takes 2 medicine to keep this under control. After we increased his seizure medicine his blood pressure started going up. We took him back down on the does of his seizure medicine and his blood pressure has came down some. It is still not where we like it. So we are hoping it was the seizure medicine so we are waiting to see.
He has not been sleeping like he was before. In fact he is only sleeping for about 3 or 4 hours again. We are thinking it has to do with his blood pressure and/or the seizure activity. Once we get the blood pressure under control again we will re-address his seizure activity.
His next doctors appointment is at the end of this month. We are going to see his NS and have a year check-up on his shunt and CT scan. He has not gain any weight but he has not lost anymore either.
Thanks everyone for stopping in and checking on Andrew. Please keep my family in your prayers. We have been struggling financially but my dear friend has planned a benefit for Andrew.
Monday, October 8, 2007 6:58 PM CDT
HAPPY 10TH BIRTHDAY ANDREW!! OCT. 9
HAPPY 6TH BIRTHDAY ALEX!! OCT. 10
To my dearest Andrew,
Tomorrow it is your 10th birthday. The birthday I dreaded the most! I have not looked forward to any of your birthdays since you were diagnosed but this one officially started this medical death sentence of the 10-15 year life span they have given you. I always hope and pray that they are wrong. I miss you my baby even though you are still with me. I ache for you to run from couch to door, laughing and saying "it's a party". You always use to cry when we sang Happy Birthday, did you know something or did you think we were very bad singers? How I wish you could ask for the things that 10 year olds would want. I feel very blessed to have you in my life. You have taught me compassion, given me strength and have shown me what truly is important in life. Your favorite part of your birthday parties was always the balloons. This year we got you a Superman balloon for our superman.
This weekend we had the usual birthday events. On Saturday my family was here and on Sunday your daddy's family came over. I know you did not even realize this was a very special weekend but you did great. I really enjoyed feeding you a little white cake with a little ice-cream. I know I know you are not suppose to have anything by mouth but I love watching your big brown eyes as I was feeding you. I know I just do it now because Alex's birthday is the day after your. God gave us Alex so we would continue to celebrate life. He has been the best little brother and son. I just do not know where we would be without him.
Thank you so much for giving us 10 beautiful years of your life. We love you more than words can say, but you know that because words are not needed when we look into your eyes and feel the warmth and inspiration that you stand for.
Many kisses and hugs;
Your mommy
Tuesday, October 2, 2007 8:16 AM CDT
Andrew has had more complex seizures this weekend. He has complex partial seizure. Friday he started convulsing with them. He done this all weekend. We contacted his neurologist yesterday and we have increased his seizure medicine to see if we can control these breakthrough seizures. He has slept a lot his weekend. He is down to 65 pounds.
On another note, Colin has been having bad headaches so he has to have a MRI Friday. We are hoping they are stress related. Also got some news regarding Alex, he was evaluated at school for PT and they said he has decreased weakness in her legs. So we are taking him to an orthopedic doctor. He was tested for Sanfilippo at the age of nine months and was cleared from having it.
We need a break!! Colin and I had our 17th wedding anniversary yesterday. We both worked opposite shifts so it was just another day. Of course we have the boys birthday's coming up. Andrew will be 10 on the 9th and Alex will be 6 on the 10th. As always thanks for stopping by and checking on my family. Thanks for all the prayers.
Wednesday, September 26, 2007 7:22 AM CDT
We ended going to the hospital twice last week. : ( On MOnday Sept. 17, we had to take Andrew in and get his g-tube changed out because his was leaking really bad. Then on Saturday Andrew's g-tube came out. He had the non-balloon g-tube; so it is hard to believe it came out. We got his feeding pump on Thursday so I started him out on it Friday. He did great! I hooked him up while he was still in bed and he did fine. He wore it most of the day and seemed to be tolerating his feds. I had hooked him up to the feeding pump on Saturday morning and everything seemed fine. I set it to pump for 3 1/2 hours while he was sleeping Saturday morning. The pump went off at noon. I started to unhook him from it. I raised him up to unhook from his stomach and found his g-tube, blood and stomach contents lying on the bed and down the front of him. I was horrified. I still do not know what happened or how long it had been out. He was not wrapped in the tubing.
I knew we had to get him to the hospital as soon as possible so I called Colin and told him to come home and get here as soon as possible. Long story short we got his at the hospital at 1:45. They tried to get his g-tube back in but his stoma had closed some from swelling and trauma. He had just g-tube changed out on Monday of last week. So we ended up putting the MIC-KEY. This is our first experience with the balloon. It seems so much easier to put in and take out. I just hope this one stays in. They wanted us to come in so they could put the non-balloon back in but we decided to try this one for a while. I cannot imagine how his little stomach feels with the entire trauma of having 2 g-tubes come out in less then a week.
I have not put his back on the pump yet. However when I do he will be up and moving around with the bag in the back pack.
Thanks so much for all your prayers and support.
Monday, September 17, 2007 7:32 AM CDT
Tuesday, September 17, 2002, it was about 4:00 pm in the afternoon. We were getting ready to go and have a quiet birthday dinner for Colin; his birthday was the next day. We were going to McDonald's; Andrew favorite place to eat. He was singing Old MacDonald's because he was excited. That was what he would call McDonald's. We were going to meet Colin's brother and his wife there. Little did we know that our life was going to take a drastic change!
We had been going through testing at Cincinnati Children's Hospital to see why Andrew was so hyperactive and loosing skills for about 6 months at this time. The doctors really did not give us any information on what they thought was wrong with him. I know I would ask if they thought what they were looking for was life threatening but I realize now that they never answered this question directly. Andrew had many test performed. I would copy the blood and urine test and then come home and look up information on the internet about them. At one point they had ordered the mucopolysaccharide screen. I look up the word and was immediately horrified about what I was reading. I said there is no way he had this horrible disease. So I put it out of my mind.
It was a beautiful fall day, the smell in the air; the leaves were starting to turn colors. The phone rang it was the developmental doctor who was looking to find out what was wrong with Andrew. Colin answered the phone. He seemed to be in a bit of a fog so she asked to talk to me. I got on the phone; she started telling me that they knew what was wrong with Andrew. She proceeded to tell me that Andrew had Sanfilippo Syndrome, Type B. I asked her how to spell it. She told me not to go looking it up on the internet and that we had an appointment with Genetics on Thursday. They would explain more in detail. She told me that it was one of the milder forms of MPS as kept referring too. She did not go into any details of this disease being terminal. Of course at this point this was all Greek to me. I had taken notes during this phone conversation; we ended our phone call with her telling me how sorry she was. Of course not knowing anything about Sanfilippo I was confused and upset. Something was very wrong.
I went straight to the computer and typed in Sanfilippo Syndrome. I was horrified by what I was reading. I started crying. There was no way this was right. They had to be wrong. My baby was going to loose his speech and his understanding by the age of 6, remembering he was going to turn 5 in a couple of weeks. The hyperactivity would get worse and he would not be able to sleep. It just went on, seizures; his ability to walk, have to be tube fed. Oh my God, this cannot be happening, and then I read that Alex could also be affected and that the life expectancy was 10 to 15 years of age and NO CURE! Colin was in the bathroom complaining that the toilet paper rolls were always empty. I struggled with getting the words out; I told him that life was much worse than empty toilet paper rolls. At this point he was behind me staring at the computer screen. He could not also believe what he was reading. We were simply devastated.
We decided to go ahead and go out with Colin’s brother. But we realized now that that it would not be a celebration. We went through the motions of the next few days. We went to the appointment with genetics, we were in a fog. They could not offer any new information but confirmed everything we had read. Alex was tested. We found out about two weeks later that he did not have this horrible disease. We had to try to learn to live with what life was going to be like for Andrew and our family. W also had to deal with the fact that we had already buried two children and was going to have to bury our third. I simply could not understand why life was so unfair.
It does not seem life it has been five years. It seems like just yesterday that we received this news. Andrew has not followed the instruction book as I call it about Sanfilippo Syndrome. Watching Andrew go from being a happy, full of life little boy to a lifeless child that has no emotions and has suffered tremendously is heart wrenching. I try to hang onto hope but it is so very hard. The worse is yet to come. We love Andrew dearly and celebrate his life daily. We try to keep the emotions of the ending of the stories well hidden, because if we bring out those emotions sometimes life is so overwhelming and way to hard to bear.
As always thank you so much for stopping in and checking on Andrew it means the world to us. He continues to struggle. I know I did not update after his last doctor’s appointment but it was way too hard, we did not get the best news. They did lots of blood work and urine test to see if he had any type of illness that could be causing his to sleep more. All tests came back ok. So it is probably the progression of Sanfilippo that is causing his to sleep more. He has lost weight so he will be put on a feeding pump. He cannot handle large volumes in his stomach so we will be pumping his nutrition in slower. He has to go to the feeding team on Thursday. In three weeks he will have his tenth birthday, the clock is ticking louder. I hate birthdays and MPS!!!
Saturday, September 8, 2007 8:33 AM CDT
Life is never easy, but sometimes I wonder why life has to be so tough. This month marks the 5th years that we have known that Andrew has Sanfilippo Syndrome. We have watched him go from a little boy who is full of life to a little boy that is lifeless. It breaks my heart to see how this horrible disease ravages his little body.
He has gone from a little boy who never slept to sleeping all the time. We do not know why. He goes to the doctor this Tuesday at 10 am. I hope we are able to find out what is causing this. Hopefully it is something that we can help him with. We are not ready for him to take the downward spiral that they said would come. He has lost 3 pounds. He is not showing any outward signs of being sick. He is well hydrated because he gets everything through his g-tube.
Please keep him in your prayers!!
Friday, August 24, 2007 9:06 AM CDT
Well we got the stove and dryer fixed to the tune of $286.95. They think we had a power surge. I guess it is still cheaper then buying new one. Hoping our luck will start changing.
Andrew's diarrhea continues. He has good days and bad days. He slept better last night then he has in a couple weeks. We had to cut out his feed right before he goes to bed because we think that it was causing a lot of stomach discomfort. We increased his other feeds by two ounces to make sure he is getting enough. He is still choking from time to time.
We did get the results from his ECHO. He has a small leak in his aortic valve. Aortic valve regurgitation develops when the aortic valve does not function correctly. The aortic valve works like a one-way gate, opening so that blood from the left ventricle (the heart's main pump) can be pushed into the aorta, the large artery leaving the heart. From the aorta, oxygen-rich blood flows into the branching arteries and through the body to feed the cells. When the heart rests between beats, the aortic valve closes to keep blood from flowing backward into the heart. In aortic valve regurgitation, the aortic valve does not close properly. With each heartbeat, some of the blood pumped into the aorta leaks back (regurgitates) through the faulty valve into the left ventricle. The body doesn't receive enough blood, so the heart must work harder to make up for it (compensation). His doctor said that right now it is not a big worry. We are just watching this right now.
Alex continues to do well at school. Andrew never progressed this far so this is like being a first time mom!! As always Thanks so much for the continued love and support for my family.
Thursday, August 16, 2007 8:10 AM CDT
Hello everyone!! Wanted to update it has been a couple of weeks. Bad luck still continues at my house. No sooner we get the car back my stove and dryer stop working. What is that saying; if it was not for bad luck we would have no luck at all.
Andrew has been having severe diarrhea, have not clue what is going on. He has not been sick. It is amazing how he can go from constipation to diarrhea. His ulcer has seemed to calm down. We have not got any blood back from his g-tube. He has been choking a lot on his own saliva. There has been a couple of times that he has scared me to the point I was going to call the life squad. We still have not got his results from his echo. His heart doctor is on vacation.
Alex is doing really well. He is all healed. His first two weeks of school has been great. He gets tired from going all day but they said it takes about a month to get used to this.
As always thanks so much for visiting and praying for my family.
Saturday, August 4, 2007 11:50 AM CDT
Hello everyone!! The last week and a half has been going pretty well. Alex has had some good days and some bad days but hopefully it will pay off in the end. We are looking forward for him to start kindergarten on Monday, Aug. 6th. Hopefully he will not be as sick as much this year!! He is ready to go back to school. He will be going all day and going 5 days!! Andrew and I will not know what to do with ourselves. LOL!!
Andrew stomach has been feeling better! He has been taken off the ulcer medicine. We are hoping that it does not cause him any more problems. We still have not gotten the results from his echo. His heart doctor is on vacation. I'm thinking it looked ok or they would have called and let us know something before she left. Another note is that is reflux is under control his esophagus looked really good.
Colin finished his summer semester with 3 A"s!!! Way to go daddy!! He starts back to school on the 13th of August. He is taking 3 classes again. We finally got our car back after being in the shop for 32 days!! YAY!! As always thanks so much for visiting and praying for our family. We look forward to the notes in Andrew's guestbook.
Friday, July 27, 2007 4:14 AM CDT
Alex did really well. He throat is sore, but he is such a big boy. I got home with him around 12:15 pm. I got him comfortable with my niece and off to Cincinnati I went.
I made it in plenty of time before Andrew went under GA. So I was able to hold his hand while they put his to sleep. His procedures took about and hour. His scope showed ulcers around his g-tube on the inside of his stomach. Everything else looked really good. His g-tube was tight so they changed this out while he was asleep. He is back to the BARD button. He had some bleeding but over all he is recovery very well. Right now we are going to treat the ulcers with medicine and hope we do not have to put his through any type of procedure for the ulcers.
As always thanks so much for your prayers, love, and support.
Tuesday, July 24, 2007 10:52 AM CDT
Good morning,
I wanted to update on Andrew and Alex. Tomorrow both are going under GA. It is going to be a very hectic day.
Alex will be getting his tonsils out at 8am in the morning in Florence. They said he should be ok to go home around noon. My mom, dad and niece are going to meet me at my house to watch Alex so I can run up to Children's to be with Andrew.
Andrew has developed blood coming from his stomach which started last Wednesday. He has to be at Children's hospital at 12:30 for a upper endoscopy and a heart Echo. I'm so worried what they are going to find. His nurse is coming to the house to pick up Colin and Andrew. I cannot thank her enough. His procedure starts at 2:30 which should give me enough time to get Alex home and go up to Children's so I can be with him.
Please pray both my boys do well through these procedures.
Monday, July 9, 2007 7:35 AM CDT
Life is still so overwhelming. We talked to a lawyer on Friday about the SSI issue and unfortunately there is nothing we can do about the situation but pay back the $5000.00. What it boils down to is the system. I send in our check stubs every month so I’m doing my part. However, it is up to the SSA when they decide to post the check stubs to Andrew’s account. So what has happened is they have not done this the time frame so he was overpaid. I’m guess this has been going on for a while for it to get so high. So if we went in front of a Law Judge what would I have to offer but my word and going up against the government I just do not think that would be enough. I was told by the SSA administration that I should have sent back what Andrew did not deserve! What? I think he deserves far more than whatever check he received. So now we wait to see if is going to be able to keep his Medicaid. At this point I do not what his to get his SSI back because what has it gotten him so far? It sure has not helped out life at all. Kentucky does not have medical waiver based on his disease it is depended on our income.
We are waiting for his GI team to schedule his upper endoscopy. His stool came back fine. He still is having a lot of trouble with his stomach. He is still spitting up the formula that we are putting through his g-tube. The carafate has made no difference what so ever. He has not taken anything by mouth for two weeks now. This has been one of the hardest things we have had to do. It is in parents’ nature to feed your children. I’m so worried that he feels hungry.
So far the only news we have had about the car is that instead on $3800.00 in damage there is $5100.00 not counting the labor. So I figure it is going to be about $6000.00 in damage. The insurance company is sending out an adjuster this week. So hopefully we will know more. If they total it than we owe more than the NADA values it at so I do not know how things will go. If we continue to make the car payment or if they settle for the amount that the insurance company pays them, I guess that would be wishful thinking. We did not take out Gap insurance.
I also have to battle Aetna. They do not want to pay for Alex to get his Tonsils removed. Nothing can ever be easy.
As always thanks for stopping and checking on our Andrew. He is the light of our life and it has been so hard to watch him go from a full a life, happy child to a child that has to struggle everyday and has no emotions what so ever. It is so hard to figure out what is going on when he has not way of communication.
Sunday, July 1, 2007 4:03 AM CDT
UPDATE: THE DOCTORS ARE TESTING HIS STOOL TO SEE IF HE HAS SOME SORT OF VIRUS GROWING. IT WILL TAKE SEVERAL DAYS FOR THESE TEST TO COME BACK. THEY STARTED HIM ON CARAFATE, IT IS A MEDICINE USED FOR ULCERS. IT COATS THE STOMACH. THEY ALSO INCREASED HIS PREVACID. IF HE DOES NOT SHOW ANY IMPROVEMENTS THAN BY NEXT WEEK THAN THEY ARE GOING TO DO A UPPER ENDOSCOPY UNDER GA.
HE STARTED THE MEDICINE YESTERDAY, SO FAR NO IMPROVEMENT. HE ROCKED AND BEND DOUBLE SO MUCH HE HAD HIS G-TUBE BLEEDING.
What a week. I really do not know where to begin. The week started very early on Monday morning when Colin called and said that a animal ran out in front of him and he wrecked the car. He is ok but the damage to the car is going to be around $3800 and maybe more if the transmission has to be replaced. : ( So we are waiting to hear from the insurance company. If they decide to total the car we are up the creek. We owe way more than what it is worth.
Andrew lost his SSI check because now we make to much money. I just do not understand the account system of the government! LOL!! Does anybody? Now they say we owe then almost $5000 and what it back now. If they would process the check stubs each month when I send them in we would not be in this mess. If anyone knows the secret to winning against the government please let me know. We do not make enough money to pay our bills so I do not know how we are going to pay this back. : (
Alex has strep throat again. I cannot wait till they take his tonsils out. His consultation is this Thursday. He does not want to have this done so I guess I will hand him over kicking and screaming. I will update when this will be.
Now Andrew! Poor Andrew he cannot catch a break. He has been in stomach pain most of the week. He bends over double with pain. He has lost 3 pounds in a week. He is having bowel movements. He has a slow empting stomach so the thinking is that is causing a lot of discomfort. So early this week we began taking the small amount of pureed food out of his diet to see if that help with the discomfort. It did not help so we cut back on his g-tube feed still no help. We took him to get a abdominal x-ray Thursday to see if there was anything acute going on. Nothing showed up. So Friday they changed his Pediasure to Ensure plus so he would get the extra calories and protein since he will not be getting anything by mouth. He is still showing signs of discomfort. They are not sure if he is able to handle the volume in his stomach anymore. We are going to see the feeding team on Tuesday at 10am. I will try to update as soon as possible. I hate this disease and what it is doing to my baby.
As always thanks so much for stopping in and praying for Andrew and our family it means so much to us.
Wednesday, June 13, 2007 6:48 AM CDT
Sorry it has been a couple of weeks since my last update. I'm feeling much better. Colin and Alex ended up getting strep. So far Andrew has not had anything beside his normal. He remain pretty much the same. His balance comes and goes. Mostly it is awful but he has had a couple of good days where he has not fallen.
His bowels have been going crazy. He has been going about 3 to 5 times a day. I guess it has to do with him being on a pureed and liquid diet. I can tell you it is better than him not going at all. Every time we take him outside he has been having complex partial seizures. He is still not having convulsions. His g-tube is looking much better.
As always thanks so much for checking in on us. Please leave us a message so we can see who stopped by.
Friday, June 1, 2007 4:40 AM CDT
We took Andrew to the pediatric surgeon on Monday so they could look at his g-tube. It is not prolapsed stomach which is really good news. It is granulation tissues as we suspect last week when we talked to the feeding team. We are treating it with silver nitrate for 3 or 4 days. He has had it once before right after he got the peg tube and it was because the tube was too tight. His discomfort is much better around his g-tube.
Balance remains horrible. He is drifting backwards when he stands. I'm going to try to get a video today and I will put it up on Facebook. He cannot walk with out the support of Colin or me. Bowel movements are crazy at the moment some days he is having around 5; as long as he goes. He also has been having a lot of nasal congestion going on. We been keeping a close eye on this.
As always thanks for stopping by and checking in on us. Please leave us a message in our guestbook so we will know you were here.
Saturday, May 26, 2007 6:16 PM CDT
Andrew started to run a low grade fever on Wednesday. He is showing a lot of stomach discomfort. His g-tube was looking a little red, so we thought maybe he had some granulation tissue. It turns out it is a prolapsed. His pediatrician thinks it is his stomach coming through the g-tube hole. We do not know what they are going to do about this because his GI doctor will not be in clinic until the 12th of June. He has been have looser stools than what is been normal for him lately. His pediatrician put him on bentyl to see if it would help with the stomach discomfort. I will be on the phone the first thing Tuesday morning.
Wednesday, May 23, 2007 9:54 AM CDT
Sorry it has been a couple of weeks since I have update. I have been sick. I'm finally starting to feel better. I'm just hoping now that Andrew does not get it. I have had a bad upper respiratory infection. Of course I put off going to the doctor as long as possible. Anyway enough about me.
Andrew is doing pretty much the same. He is walking less and less. When he tries he just falls. He wants daddy to carry him everywhere. He is not wanting to take much food by mouth he just gags when we try to give it to him. We are looking into information on redo our bathroom. We have to figure out something to get him in and out of the tube. It is getting really dangerous for daddy to pick him up and carry in in the tub. We have a garden tub so the sides are really high.
Alex graduated from Pre-school last week. It was so emotional. He did great. You could tell when he walked out on the stage that he was nervous. He also is going to play machine pitch baseball this summer, this is making mommy nervous.
As always thanks for stopping by and checking in on Andrew. I also want to say Thank You to all the friends and family who made tributes to him on the MPS Society's website. It really touched our hearts.
Thursday, May 10, 2007 6:59 AM CDT
HAPPY MOTHER'S DAY!!
Andrew has been about the same. We had to take a emergency trip to the hospital on Monday. Andrew's feeding tube came apart. So they had to pull the old one out and put in a new one. It came apart at the base where we lock in the external tube. He has gained a pound back.
He continues to have uncontrollable movements. He is not as bad at some of the children we have seen with these movements. His sleep is still horrible. He is all over the place at night. His bowels continue to struggle.
Thanks to everyone for praying and stopping by to check on Andrew.
Thursday, May 3, 2007 7:49 AM CDT
I know it has been a while. You may have wondered where we been. We have been consumed with Andrew and Alex. We have been working all the time. Any how here is the latest.
Andrew is taking less and less pureed foods by mouth. He just is not interested in eating. : ( He has not lost any more weight so the increased in the formula through his g-tube is maintaining him.
His stomach and bowels have been bothering him for the last two weeks. Last week he was having up to 7 bowel movements a day and this week he is struggling to have one. He doubles over in pain. I have tried everything from gas drops to Pepto. He still gets a full cap of Miralax daily. I just do not understand how things can be so different week to week.
He still is very unsteady on his feet. He is leaning back when he stands and is constantly trying to maintain his balance. We have been using his wheelchair more to keep him safe.
Alex has been on and off sick for a couple of weeks. We are going to have to get his tonsils out during summer break. He is not a happy camper about this.
Colin will be starting school in June. He is going the Summer semester. He is a nervous wreck. He will be taking a nursing class in the fall.
As always thank for stopping by and checking in on us. You prayers and love is much appreciated.
Wednesday, April 18, 2007 7:19 AM CDT
Sorry it has been a while since I update.
We had our swallowing study done last week. We did not get the greatest news. We knew his swallowing was getting worse and this confirmed it. He is not chewing at all. He is using his tongue to mash food with the roof of his mouth. Then he is pooling food and liquid in his throat, right by the flap to his airway. So he is a high risk for aspiration. They said that he has probably aspirated but they did not see it on the 10 minute video. We have to be very careful feeding him by mouth. He is only to have honey consistency pureed foods (no solids at all) and they also have increased his formula by his g-tube to try to get him not to lose anymore weight.
We have to weigh him next week and then call them to let him know what his weight is and make adjustments accordingly.
Thanks everyone for praying and visiting Andrew.
Wednesday, April 4, 2007 8:37 AM CDT
HAPPY EASTER EVERYONE!!
Andrew is still struggling with walking. We had the door open to the patio; Andrew was standing looking out it the next thing we know he has fallen out the door and landed on the patio. Thank goodness he was not hurt. He jammed his little finger but other than that he was fine. He is falling all the time.
The last couple of weeks we have suction his nose a lot. He has started coughing at night. The last two nights he has coughed all night. His salvia is pooling in his mouth. He still get soft foods by mouth but he has been struggling with swallowing. We are waiting for them to schedule a swallowing study. We want to make sure he is not aspirating.
His bowels are still erratic. No rhyme or reason to his bowel movements. He is still getting a capful of Miralax a day. He is down to 70 pounds. He has lost 4 pounds since his dental work 3 weeks ago. We will be seeing GI about this also.
He is not sleeping well again. Of course the coughing is not helping.
As always thanks so much for your prayers. They mean much to us.
Hugs
Paulina
Friday, March 23, 2007 4:06 AM CDT
Happy Spring everyone!! The picture was taken last week of Andrew and his daddy. I have put some more in the photo section.
Andrew has went from diarrhea this past weekend to no bowel movements for 2 days. He is still getting Miralax everyday. He has a lot of nasal congestion from the Nasotracheal Intubation. He has a horrible cough. His nurse came today she checked his lungs they are clear. He is not running a fever. We took him in this morning for a shunt check up.His shunt is working. He is still have a lot of trouble with his balance.
Alex is doing well. He had his Pre-school play last night. He did great. He was chosen as Student of the Month.
Sunday, March 18, 2007 7:46 PM CDT
Andrew had four complex partial seizures last week; they lasted for hours. We are talking to neurology to see how we can get these under control.
Andrew did great for his dental work. Aside from having a bloody nose from the Nasotracheal intubation, 3 small fillings, and removed a couple of baby teeth that was loose. He is such a SUPERMAN!!
On Friday while he was in the OR he decided that it was time to have a lot of bowel movements. Which I guess is a good thing but now however he has diarrhea. Poor Andrew; he goes from not being able to go to not being able to stop.
He has had good days and bad days with sleep this week. His balance is about the same.
Thanks so much for checking in on our baby.
Saturday, March 10, 2007 6:12 PM CST
Andrew is having seizures every two days. They are complex partial. He stares to the right downward, his head is turned in this direction also and then he starts chewing, lip smacking and bobbing his head. Then he will get up and walk in circles. He will do this for hours. We have increased his seizure meds but it has not helped this.
His balance remains horrible. He is still taking the medicine for Vertigo. He also is still walking into walls and falling over furniture. His safety is more of a concern as we try to stay by his side at all times.
He has surprised us with his sleep; he still is restless throughout the night. But there are times when he remains asleep until mid-afternoon. He seems to be fatigued even when he is getting some sleep. It continues to be a day-to-day battle for Andrew.
On March 16th he has dental surgery. They are going to put him under, he has three cavities. They are also going to clean his teeth and see the severity of the cavities.
His bowels have been moving pretty good. He still is getting a capful of Miralax a day. He is remaining consistent. Please continue to pray for our precious boy. Thank you for your concern and for your support.
Colin
Saturday, February 24, 2007 6:19 PM CST
Andrew is still taking a capful of Miralax a day to keep his bowels moving. He goes about 4 out of 7 days; once a day. I guess this is better than nothing. He has good days and bad days with wanting food by mouth. He is still not digesting very well.
His balance has been really bad; his neurologist decided to give Meclizine a try. It’s used to treat Vestibar Balance Disorders: Vertigo, Motion Sickness, and Dizziness.
We went and saw the neuromuscular doctor on the 20th. She spent a lot of time with him. She wants to move ahead with Carpel Tunnel testing for him. We not sure if we want to put him through the testing. I had this done and it is painful. She also wants to brace his feet for his contractures. His heart murmur is still there.
He woke up Wednesday with a fever. He had some congestion so we took him to the pediatrician and he felt it is viral. He has some congestion. We are watching him so this does not turn into something.
As always thanks so much for stopping by!!
PS: You know we would love for you to stop by She-She. : )
Tuesday, February 13, 2007 7:03 AM CST
Hello everyone!! First of all I want to say A BIG THANKS to everyone for praying for Andrew. It means the world to us to know so many people care for him and my family.
The clean-out really took its toll on Andrew. He got really dehydrated. He looked so bad. We went for his test on Tuesday, it came back normal. He did not empty out very quick so they are thinking it brain related. We came home in a snow storm and ended up with 7 inches of snow. We started hydrating him right away. On Wednesday he was not having any wet diapers. So we were asked to bring him in so they could do some blood test and check him for dehydration. Duh!! I knew he was dehydrated when he was at the hospital on Tuesday. We had pumped a bunch of Pedialyte in him so I knew he was on his way back. I had this gut feeling this was not going to be a good trip to the ER. It turns out I was right.
We had to go through what is going on with Andrew to every doctor there. I just do not know why they cannot read what the first doctor writes. Anyway the doctor wanted to start a IV and do some blood work because Andrew was dry. So 3 nurses came to put the IV in. After 7 tries they gave up. His veins kept blowing. So they sent in 2 more nurse to try, after 2 more sticks they gave up. I'm so made at myself for letting them stick him so many time.
So it was decided to put the Pedialyte through his g-tube, I had been doing this at home so I did not feel the need that we needed to stay at the hospital for them to do this. So being the nice person I am I told them we wanted to be discharged. I asked what else they were going to do and they said a x-ray and then just watch him take his pedialyte. His x-ray showed more stool. His blood work came back with elevated AST/ALT.
We were suppose to go back to the GI doctor today but of course we are having a ice storm so we canceled. His bowels are moving. We are giving him a capful of Miralax a day. I hope we can figure out why he gets so backed up. I'm wondering even with him having a bowel movement if he is able to get it all out? He is sleeping some better now that he does not have all that stool in him.
We did get some good news. his shunt is working. The last CT scan showed that his ventricles have gotten smaller than pre-shunt. Yay!!!
Paulina
Wednesday, February 7, 2007 6:41 AM CST
The clean out has wiped Andrew out. He is dehydrated and very weak, but we are able to manage this at home. I cannot believe how he went from looking good to looking awful from all the poop coming out. I actually got really scared last night. He just look like he was not going to make it.
The only thing we know about the test is that they got some good information, but his colon did not empty all the way out with the enema.
Hope to be able to let you know more today.
Tuesday, February 6, 2007 4:45 AM CST
We got some good news today, Andrew's ventricles are smaller than what they were pre-shunt. So this means that his shunt is helping the pressure inside his head. YAY!!!
Now onto the other end. We still did not get him to have another bowel movement. So I called the GI doctor and they were going to admit him, but with all the sickness it was decided that we could clean him out at home. So we started the process yesterday after noon. Within a 1/2 hour we started seeing results. He is very weak and tired now. What we did was the process of colon cleansing so it was very hard on him.
We are going to the hospital today to have a water soluble test done to see what is going on. Hopefully it will give us some answers why Andrew cannot go and why he gets back-up so bad. They want to come up with a better game plan.
Thanks so much for all your thoughts and prayers.
Sunday, February 4, 2007 6:36 PM CST
We ended up taking him to the ER, he started vomiting. He vomited all the way to the hospital. By the time we got there he was so lethargic. They did x-rays of his shunt and a CT scan. They came back fine. They also did a x-ray of his stomach. We have never seen so much poop in our life. They said vomiting is from him not having anyplace for what we put in him to go so it comes out.
They gave him a rectal examine to see if he had a hard dry ball of poop that was stopping him from going. It was not hard so I cannot understand with all that we gave him to help why he could not go.
So they gave him a enema and sent him on his way. He is going to get two capfuls of Miralax for a couple of day to get his where he needs to be. He is still very uncomfortable and last night we have him some sips of water and he threw them back up. He has not had another bowel movement since the enema.
Saturday, February 3, 2007 11:40 AM CST
I wish I could update and say Andrew is doing good, but I cannot. He is suffering with stomach problem. The bowel movements have stopped now. It has been 5 days since he has had one. We started Senna last night in hopes that we can get him going. He is still taking the green tea, prune juice and Miralax daily.
Andrew does not want to eat. We have been giving him baby food by mouth just so we can keep the oral stimulation. Everything we give him his making him aggravated and uncomfortable even fluids.
When we give him liquid foods through his g-tube he is having the same reactions. We are getting back a lot of residue. We found out last year the he has delayed gastric empty so I suppose this is getting worse. He is just not tolerating anything we are putting in him.
His GI doctor started him on Carafate on Friday. We are hoping it will help him but one of the side affect is constipation. Of course it is the weekend if we have to go to the hospital it will be through the ER.
He is still having trouble with his balance. It is really sad to watch. This disease stinks. I have to sit and watch my baby suffer and cannot do anything to help him.
Thanks so much for stopping in and checking in on Andrew. It means the world to us. Please keep him in your prayers.
Sunday, January 28, 2007 3:43 AM CST
Andrew continues to struggle with bowel movements. He is having one every other day but you can tell it is a ordeal for him to get them out. I think the combination of the things we are giving him is helping. However he is still showing discomfort. Even though he has a g-tube he gets pureed foods by mouth. His appetite is not where is was. I do not know if the food is causing his discomfort, maybe he is having trouble digesting.
Andrew is still having a lot of trouble with walking and crawling. He falls all the time and when he tries to crawl, he cannot move his arms so he goes down on his face and cannot get up. It is so heartbreaking to watch. Yesterday he was walking in the kitchen and just fell forward. I'm so afraid that he is going to hit his head on the counter.
We went to Neurology on Wednesday, they started him back on his seizure medicine. He has only had one of the focal staring since he started back; he started back on the seizure medicine on Thursday. His doctor is going to talk to another specialist about Carpel Tunnel that another family suggested.
He continues to be all over the place at night. Waking frequently.
Thanks so much for stopping in and checking on Andrew. Many hugs and prayers to your family.
Wednesday, January 24, 2007 6:06 AM CST
Andrew has been experience some discomfort. We think it is coming from his stomach. He is having a very hard time passing stool. We took his to the hospital last week so they could do a CT scan and a shunt series. Both came out normal. He had a x-ray that showed he had some stool backed up. We are giving him Miralax, prune juice, and green tea. He is having a hard time sleeping again. We have found out that constipation will affect how his shunt works.
We are going to Neurology today to address his balance issues. He is not walking much but when he does he has been falling. His arms are getting so weak that when he crawls he can pull himself along. He has been doing a lot of focal point staring and walking in circles. He is also twitching a lot. I will let you know what we find out.
Thanks so much for stopping by and checking in on Andrew.
Wednesday, January 17, 2007 8:49 AM CST
Hello everyone! Thanks for visiting Andrew. He is sharing his laughter with us. His sleep is not where it should be. He still wakes up frequently. But it is better than it was before the shunt. He is having problems with his balance. He took a really hard fall Sunday and hit the back of his head on the wall.
He had his G-tube changed out last Tuesday with no problem. He has a Mini non-balloon now. We actually like it better than the Bard, the attachments lock into place. He weighed 76 pounds!!
I think we are going to have to revisit the seizure issue. He has been doing a lot of focal point staring and walking in circles. He is also twitching a lot. He has been on his hands and knees and rocks back and forth. He was taken off seizure medicine last February. I hope this is just me being and over protected mother.
Thanks again for checking in on us. God Bless all your families.
Saturday, January 6, 2007 8:01 AM CST
ANDREW'S NEWS
Andrew's CT and ultra sound shows that his shunt is working. He has fluid where it should be which means the tubing is draining. His ventricles are a little smaller!!
We do not have to go back to Neurosurgery for 3 MONTHS!!!
Since they have turn him down to the lowest setting he has been very content. His sleeping has improved. Besides from having some stomach discomfort; which I believe is coming from the Flagyl, he is doing pretty good.
He is still taking the Flagyl, still has no symptoms of C-diff. He has to go to GI Tuesday so they can change out his feeding tube.
FAMILY NEWS
We are doing pretty good. Colin and I are working as much as possible. 2006 was a very tough year financially for us and medically for Andrew. We are praying 2007 will be much better. Alex is doing well. He might have get this tonsils removed. Thanks everyone for stopping by to check on Andrew. We love to read your messages in his guestbook.
Friday, December 29, 2006 4:25 AM CST
HAPPY NEW YEAR EVERYONE!!
Well we thought we were not going to go to the hospital until after the new year. LOL! Andrew has decided different. On Wednesday Andrew's bowel movement was nothing but bright red mucous. He has not had any diarrhea, vomiting or fever. We took a sample to the hospital and they did blood work. We got the results back yesterday and he has tested positive for C-Diff. He has started a Flagyl for 14 days.
He has been doing pretty good otherwise. His feeding tube has not came in yet. We are hoping it will be in next week and they can change it on the 4th while we are there for Neurosurgery.
We had a wonderful Christmas, well as much as we can. We are very thankful for what God has given us. Thanks so much for all your prayers they mean the world to us.
Sunday, December 17, 2006 3:52 AM CST
Thank you everyone for your prayers. Andrew has had a much better week. He has seem more content. He has been sharing his laughter with us more often.
I posted in my last update that his MRI is stable. On the ultra sound they did find a small amount of fluid pockets which is a indication that his shunt is working. We do not have to go back to the hospital until after Christmas!! YAY a week off from going to the hospital. We do not have to go back until the 4th of January. He will get another CT, ultra sound and then we go see the NS.
Andrew will be getting his G-tube changed out soon. It will be the week after Christmas. Our little man has outgrown the one he has. He has a Bard right now, we will have to go with a different brand because the next size up on the Bard will be too big. We will be going to see the feeding team the week of Christmas. He has been choking on his salvia a lot here lately. I do not know if the breathing tube he had during his MRI has irritated his throat.
Alex is doing well. He has been staying with my mom and dad some. I know he gets tired of going to the hospital all the time. He only has three more day of school until his Christmas break.
We are having both of our families coming to our house this year for the Holidays. Colin's family will be here this weekend and my family will be here on Christmas day. It is much easier for the family to come to us.
We want to wish everyone a Happy Holidays. It has been a tough year for my family. We pray that next year will be be much easier.
Wednesday, December 13, 2006 5:36 AM CST
Wish I could say we know more now than what we did this morning but I cannot.
The day was very long. We were suppose to have his ultra sound at 10am. We did not get it until 11:15. Then of course we had to go back and get the second ultra sound because the order did not ask for the tech to look for fluid pockets.
We had about 40 minutes before we went to the MRI, we decided to go to GI to let them look at Andrew's G-tube. He is going to have to get a new one. His is getting tight, his tummy is getting a little bigger with his weight gain. They had to order the g-tube because we use the one without the balloon.
Andrew did great for the MRI. He woke up very fast. We were home by 5:30.
I'm going to call this morning to find out the results. Thanks everyone for your prayers.
UPDATE:9AM
Just talked to NS nurse; Andrew has a small amount of fluid collection with would indicate that his shunt is flowing!! The plan is that we do not have to go back until Jan. 4th for another CT, ultrasound and follow-up with NS.
HIS MRI IS STABLE!!
THANK YOU GOD!!!
Saturday, December 9, 2006 4:37 AM CST
Since they turned his programmable shunt down (1.0) Tuesday Andrew has been more agitated. He threw up once on Wednesday. Has no interest in food by mouth at all.
We went back Friday; they wanted to do a CT before they turned him down to the lowest setting. So we had to wait two hours before they could get him in. We got the CT with no GA again. Andrew was NPO in case he needed to go to surgery.
The results of the CT showed that his ventricles are stable. So they proceeded to turn his shunt down (0.5) to the lowest setting. This really worries me because it is the weekend. Going through the ER is no fun. There is only so much they can do. We found out who the NS on call was and he was brought up to speed on Andrew.
As we were leaving the hospital Andrew decided he was going to share his wonderful laughter with us. Things seem to be going great, then we were almost home and he threw up. He has developed a runny nose, which does not surprise me because of being at the hospital so much.
After we got home he threw up three more times over a three hour period. He has started not to tolerate his feeds through his g-tube. We called the hospital and spoke with some NS we have never heard of. It was not the one that we were told that would be on call. He told us we could bring him back in and they would do another CT and shunt series. We decided to wait and watch him at home.
We got him to lay down about 8pm last night; he was up and down most of the night. He had not thrown up anymore.
As of right now the plan is to go back Tuesday for his MRI and they might do a ultrasound to see if the fluid is moving down through his shunt.
Again Thank you for your prayers.
Tuesday, December 5, 2006 6:37 PM CST
What a exhausting day. We left at 7am and got home at 5pm. We had to get the ultrasound done twice, then we had to go and check out his optic nerve which showed no swelling. But of course that only meant that they would not admit him. He should have fluid draining and he does not.
We are possibly looking at mechanical failure with his distal catheter or failure of the shunt valve. The proximal catheter is working which is the part in his brain.
Another scenario is that his pressure in his brain is lower than the value setting so it is not draining off any fluid. So they lowered his value to 1.0 and Friday we go back and they lower it down to the lowest setting. We are very worried about his because he could have a subdural hematoma.
On Tuesday we go back for his MRI. If his ventricles are still increased in size, that would reassure his neurosurgeon that the valve has malfunctioned. If that is the case we are looking at surgery soon. We are not optimistic. His neurosurgeon said what Andrew is experiencing is very rare, she said she has only seen this happen three times. Please keep praying for him.
Tuesday, December 5, 2006 5:00 AM CST
Please pray!!
Andrew got his shunt on Oct. 18th. He did great for about a week and half after his surgery and has not been doing well since.
We have been to the hospital every week since sometimes twice a week. He has had 7 CT's, shunt series and ultrasonds. The last two CT's have shown that his ventricles have increased in size.
On Friday they did a shuntogram, we did not get good news from this test. The CFS is moving too slow down through his abdomen.
We have to go back today to get a ultrasound and x-ray and go to Neurosurgery right after.
Saturday, December 2, 2006 11:31 AM CST
Andrew remains the same. He had his 7th CT since placement of the shunt on Monday. We had to go yesterday to do a shunt flow test. His ventricles are still not getting smaller. We will not know anything until Monday.
Our Thanksgiving was great. We ended up going to my sister's house to everyone's surprise. My mom was so happy.
Please keep Andrew in your prayers.
Monday, November 20, 2006 7:27 AM CST
HAPPY THANKSGIVING EVERYONE!!
Andrew still has not shown any signs of improvement. We had to take him in Thursday night to get a CT and his ventricles have actually gotten larger. They have done every test that they can do on the shunt and it seems to be working fine. But it is possible for the shunt not to be working without the test showing this. So it was decided to decrease his pressure setting back down to 1.5 and see if we can get his ventricles to get smaller again. We do not have to go to the hospital this week but we have to check in and let them know how he is doing. We are hoping that his ventricles enlarged because they had turned his shunt back up.
We go back to get another CT on November 28th. We pray his ventricles have gotten smaller. That would mean the shunt is working. They also are going to do another shunt tap. If there has been no decrease in his ventricle size then they are thinking about putting a flow control valve in. He has programmable shunts Our MRI is still scheduled for December 12th.
When do you say enough is enough? When do we say this is Sanfilippo? I'm getting so weary. How can I continue to put Andrew through all these tests and procedures. Of course now we are second guessing ourselves for putting him through this surgery. We saw great improvements for about 2 weeks. His life is difficult enough without having to put him through weekly hospital visits. We have been able to get the CT’s done without GA.
We will be staying home on Thanksgiving this year. This is the first time that I have not been with my family for Thanksgiving. We do not want to risk taking Andrew out and him getting sick, not to mention the fact that he is not mobile. So we will be enjoying a nice dinner at home. Alex wants to put up the Christmas tree. I hope Andrew will decide to turn it over this year. I really miss his high energy moments.
Thanks everyone for your love and prayers
Thursday, November 9, 2006 4:33 AM CST
I wish I could say Andrew is still doing good. On Thursday of last week Andrew's incision in his abdomen started turning red. We called neurosurgery and it turns out he was having a reaction to the dissolvable stitches that was placed during his surgery. They removed a couple that had not dissolved and put him on a antibiotic. His incision looks great now.
Friday he continued to do great. Laughing at everything!! On Saturday he got up and you could tell he was not himself. He did not want to eat and he was lethargic. His gait was off again. About 4:00 pm he started throwing up, he threw up 7 times in a hour. We took him to the ER where he got a CT and a shunt series (which is a series of x-rays to check his shunt). Everything looked fine with his CT and shunt series so we went home thinking maybe he had a virus.
On Sunday he was still lethargic and not wanting to eat. About 4 pm he started throwing up again. He had not threw up in between times and took his tube feeding so I was thinking it was not a virus. We talked to neurosurgery and neurology and decided it would be best to wait until Monday and bring him into the clinic.
We took him in and the neurosurgeon thought that he was over draining because he was having these spells about the same time of day after he had been up for a while. He had a shunt tap done, his pressure was 23, which is the highest it has ever been. The thinking of why it was high was because we had to hold Andrew down which they did the shunt tap. He was wiggling. The shunt tap is where they stick a needle into the reservoir that is on the side of his head (you can see it in the picture) and measure the pressure. They sent some of the fluid off and it came back ok.
They decided to reprogram his shunt back up to 2.0. We then went to radiology for a x-ray and a ultrasound of his abdomen. They wanted to make sure that he did not have a infection or a cyst. These also came back ok.
We have not seen any improvement with Andrew. He is not throwing up any more but he still continues to experience nausea. He still is lethargic and does not want to eat. His gait is still unsteady. I'm hoping since it took him over a week to react to the pressure change that he will show some improvement soon.
As of right now, he is scheduled to have another CT scan on the 17th of November and a MRI on December 12th. Please continue to pray for my superman
Thursday, November 2, 2006 4:30 AM CST
Andrew is doing pretty well. We went to his doctor's appointments last Friday. Neurosurgery reprogrammed his shunt to a lower setting, which was totally amazing they did not even have to touch him. So far so good, he has not ran a temperature. We have kept him in the house away from people. For the next three months we have to report any fever he has to neurosurgery.
He continues to seem like he is more comfortable. He gives us laughter everyday now. It is such a pleasure to see him happy again. I cannot imagine how his little head felt like. He is eating great. He still has no desire to take fluids. We are hoping with time his sleep will improve. He seems more alert to what is going on around him. When you want into the room he knows you are there.
There have not been any changes with his heart. She said he has a innocent heart murmur. We are just keeping watch of his symptoms.
As always thanks so much for your prayers and love.
Tuesday, October 24, 2006 6:35 PM CDT
Andrew is doing pretty good! He has got his balance back. he has only fell one time since his surgery. One of the greatest things that we have seen so far is his personality has came back. He seems to be enjoying life again. He still is not sleeping very well but hopefully that will change. We can actually wash his hair without him getting upset about us touching his head.
Friday we go to Neurosurgery and Cardiology. Neurosurgery will be reprogramming his shunt to a lower setting. We hope we will see even more improvements. Cardiology wants to see him because a heart murmur was heard after his surgery. So they want to make sure nothing is going on with his heart.
As always thanks so much for stopping by!! We appreciate all the love and prayers.
Friday, October 20, 2006 2:59 PM CDT
I'm so happy to tell you that Andrew is home!! We came home last night. His Neurosurgeon said he was doing well so he could come home. He slept pretty well. He still is a little off but I would be also if I just had a VP shunt placed.
We are going to be busy for the next 6 weeks. We go this Friday the 27th so they can reprogram Andrew's shunt to a lower setting. Two weeks after that we have to go back to see the neurosurgeon. Then on December 12th he will be having a MRI.
As of right now we cannot see a big difference in him but his shunt is set on the next to highest setting. Next Friday they are going to turn it down. She said we would see more changes in him then.
He is eating really well. He is still unsteady on his feet.
We would like to thank everyone so much for all the prayers and support. We love you all!!
Thursday, October 19, 2006 5:00 AM CDT
The shunt surgery took longer than expected. He went back at 9am and came out at 12:30. They had a problem when they put shunt in the brain . Andrew did develop a brain bleed. My biggest fear. But the Neurosurgeon turned the shunt pressure back up and the bleeding stopped. She took him straight to get a MRI to make sure it had stopped and not blood clot had formed. Turning up the pressure had stopped the bleeding. Thank God.
He has three incision. One on his right side, one behind his ear and the other on the right side of his stomach. It was very hard seeing my baby like this.
He is on oxygen, and a heart monitor. No temperature. Waiting for results from a CT. They did find a heart murmur. His blood pressure has been running high again.
Please continue to pray!!
Monday, October 16, 2006 8:01 AM CDT
SHUNT SURGERY OCTOBER 18TH AT 9AM!!
CINCINNATI CHILDREN'S HOSPITAL
Hello everyone!! Thanks so much for stopping by and supporting Andrew.
Last week we celebrated birthday for Andrew and Alex. I posted pictures in the album. We had Thomas the train birthday. We decided to let Alex pick out what he wanted. Andrew did manage a smile when we sang Happy Birthday to him.
Yesterday we went and had some pictures made. They turned out beautiful of the boys. Our family picture is at the top of the page. Colin could not believe that I dressed the boys alike. He said that his grandmother use to do that.
Today we have to take Andrew for his pre-op testing and blood work. Tonight we are going to shave his head. Not happy to to this but when they do surgery Wednesday they will only shave what is needed to go.
I will do my best to keep everyone updated on Andrew's surgery.
Again THANK YOU FOR ALL YOUR PRAYERS AND SUPPORT. Please sign our guestbook we look forward to reading it.
Sunday, October 1, 2006 3:50 AM CDT
SHUNT SURGERY IS SCHEDULED FOR OCTOBER 18TH AT 9:00 AM.
Sorry it has been a while since I updated but I did not want to update until we have reached a decision.
We sent Andrew's records and MRI and CT's to a MPS expert to get a second opinion about placing a shunt in a child with Sanfilippo.
We were certainly surprised in a way of what he said or maybe we knew and just did not want to see it. Andrew needs a shunt. He said Andrew's ventricles are huge and cannot imagine how much discomfort he is in. So we are going to proceed with shunt placement. I will keep everyone updated as much as possible. We go Monday to have some blood drawn to see if there is anything else going on with him.
Thanks so much for everyone's love and support. Please keep Andrew in your prayers he is going to need them.
Tuesday, September 12, 2006 9:03 AM CDT
September 17, 2002; remembering like it was yesterday, the feeling you have when you are told that your son has Sanfilippo syndrome.
A syndrome that is so very cruel and relentless – causing Andrew to become severely retarded. A syndrome that will ruin every single cell in his body, slowly damaging each and every organ so that the short life he does have on earth is spent in and out of hospitals and exam rooms, confined to a wheelchair, in diapers, with diarrhea or constipation, a feeding tube, seizures, pressure on his brain, ear infections, respiratory infections, bone and joint pain, and many sleepless nights – until his death.
This was the day that changed the rest of our life. This was the day when our entire world was turned upside down and sideways. We got our results over the telephone, yes, the doctor told me not to look it up on the internet but being a mom I had too. Going to the genetics appointment hoping against all hope that they were wrong and feeling so numb that you feel like you are in a bad dream that you will wake up from; however the nightmare continues.
Now we are faced with the excruciating decision whether or not to shunt Andrew.
We have been gathering as much information as we can about shunts and Sanfilippo Syndrome. Unfortunately there is not much information out there. We want to make sure we make the best decision for Andrew.
The doctors are not making any promises that the shunt will help Andrew. The risks of shunt placement are known. Complications of shunting occur in 30f cases, but only 5re serious. Serious and long-term complications are bleeding under the outermost covering of the brain (subdural hematoma), infection, stroke, and shunt failure. Infection at the shunt site may cause a loss of intelligence. When shunts drain to the abdomen, fluid may accumulate in the abdomen or abdominal organs may be injured. If cerebrospinal fluid pressure is lowered too much, patients may have severe headaches, often with nausea and vomiting, whenever they sit up or stand.
So we are beside ourselves with the decision that we have to make. We are going to have to make a decision based on risks without possible improvement. Please continue to pray for Andrew. Thanks so much for stopping by.
Tuesday, August 29, 2006 7:36 AM CDT
Andrew was such a trooper yesterday.
His surgery was delayed for three hours. He did not get taken back until 3:30.
He did great. No problem with GA, no problem with the breathing tube. His eye exam has revealed that he is on the high end of normal for eye pressure (intraocular pressure) . His optic nerves looks healthy. His glasses has not changed.
The Bard button surgery went great. We had to go get a scan to make sure everything was working right. None of the nurses knew how to use the Bard, they said all they knew was how to use the Mic-key. They had to get the surgeon to show us how.
We got home at 8:00pm, everyone was tired and hungry!
Thanks so mcuh for your prayers!!!
Friday, August 18, 2006 8:25 PM CDT
Sorry I have not undated for a while. I have had a lot on my mind. I have been dreading this update. We are beside ourselves with the latest results from the MRI. Life is so unfair.
Well we got the results from Andrew’s MRI; it was not something we wanted to hear. However since we have found out that he has Sanfilippo life has not been easy.
The MRI showed an increased in ventricles size and increased fluid in his brain and around his brain since January. He has communicating hydrocephalus. We have an appointment on Aug. 25th with his neurosurgeon to discuss options for Andrew.
I have suspected that something more was going on in Andrew’s brain for quite some time. But with Sanfilippo it is hard to figure out what is going on is the natural progression of the brain or something different.
He will be getting his PEG replaced with the Bard button on the 28th. We decided to with the Bard button after talking to several Sanfilippo families and learning their experiences with the MIC=KEY button. The balloon that holds the MIC-KEY was not very durable for their children. They were replacing them very often. So we opted to go with something more durable from the start.
We went to his eye doctor on the 16th of August and they were not able to get a clear picture of his eyes. So while he is under GA on the 28th they will get a better look.
As always thanks so much for praying and stopping by. I have been working a lot so I have not been able to keep it updated as much as I want. Please keep praying for Andrew.
Tuesday, August 1, 2006 1:56 PM CDT
What a wonderful week last week was. We spent the most of it with MPS families old and new at the MPS conference. I wish we all could live in the same town so we can be there for each other every day!! I really miss them!
We got to talk to Dr. Fu who is currently doing research in MPS III B. We also got to talk to Dr. Muenzer about Andrew. A lot of Andrew’s doctors were there speaking at the conference. One of the crowd favorites was Andrew’s feeding team; some of the families wanted them to come where they lived.
Andrew has been doing very well. He has had a great week. Our sleep is still an issue. We got the CT report and his ventricles are stable, which is good news. Now the neurosurgeon wants to do a MRI to see what is going on in his brain stem. She is looking for Chiari malformation. Andrew will be having the MRI on August 7th. Please keep him in your prayers he will be having general anesthesia again.
Alex starts school on the 8th. I hope he will enjoy going back.
As always thanks for stopping in to check on Andrew.
Wednesday, July 26, 2006 7:33 AM CDT
We went to neurosurgery last Thursday, the first thing she wants to do is to see if Andrew’s ventricles have changed since January. Andrew had a CT scan done yesterday under general anesthesia. We had to be there at 10:45 am and the CT was supposed to be done at 11:45 am. He did not get taken back for the CT until 1:45; 3 hours later
He did great with the GA had no problems at all. But we made sure he did not get any sedation this time. We do not know the results yet. I’m hoping that I can get them today.
The neurosurgeon wants to move forward with caution. There are many risks with shunts but when you add brain atrophy to the mix it raises the bar to make sure we are doing the right thing. So she wants to get all the information she can to make the best possible decision.
Andrew was sick most of the weekend. He is doing better now. He has lost 3 more pounds. His blood pressure is doing well.
Alex is such a wonderful child; he had his picnic for T-ball last week. He received a trophy for playing. He came home and put it on Andrew’s treasure shelf and said “I want Andrew to have it, because he does not have one.” Alex has not touched this trophy since. It made me and Colin cry.
I will have new pictures this weekend from the MPS conference. It is being held in Covington we are so excited.
As always thanks so much for keeping us in your prayers.
Wednesday, July 12, 2006 4:24 AM CDT
I cannot believe that we are already in July. This year is flying by. It is almost time for Alex to go back to school. He starts back August 8th. We did not do anything for the 4th. Alex and I sat and watch fireworks from out sliding glass door. To Andrew it is just another day.
Andrew’s blood pressure is doing pretty good. We have it down; the increase dose of clonidine seems to be doing the trick. His bowel movements have been better. We are just using prune juice right now. Sleep is still a major issue, we hoping to get some answers at Neurosurgery next week. He goes on July 20th.
We cannot wait to get the Mic-key button placed (August 24th). It was sit flushed against his skin. They way he tosses and turns at night is really aggravating his g-tube site. We had to go yesterday and get some granulation tissue remove.
We had a blast at Kings Island last Thursday. We saw several MPS families. We actually put Andrew on a couple of the rides he did really well. I have posted some picture from our adventure check them out.
The MPS/ML conference is July 27th, 28th, and 29th. We cannot wait to see the families we have not seen in several years and the new families.
My mom continues to improve. They are talking about releasing her soon. She will still have to go to therapy 3 times a week.
As always thanks so much for all your love, support and prayers. We look forward to reading your wishes in Andrew’s guestbook.
Tuesday, July 4, 2006 7:22 AM CDT
I did not get a chance to update; we have been so busy at work. I have worked all weekend.
We had a little adventure last week, somehow in his sweet Andrew got the bar on his feeding tube half way down the tube. Colin came home from work and put it back but we had to take Andrew to Children’s Hospital so they could run some dye through the tube to make sure the fluid was going to the right place.
We went to Cardiology on Friday; there is no change in his heart. His heart rate was 139 but they are thinking that since he has problems with his autonomic system that it could be causing this. They increased his clonidine to see if that lowers his blood pressure. They are worried about giving him beta blockers with the complex problems he has. So we are going with clonidine for a couple of weeks and monitor his blood pressure to see how he does.
His bowel movements are going from one extreme to another. We were giving him the ex-lax every other day along with prune juice and miralax everyday. Last Friday we stopped giving him the ex-lax because he was putting out bowel movements that was nothing but liquid. We all decided to lay off the miralax a couple of day.
He is still having a tough time sleeping. I think his stomach and his head is playing a big part in him not sleeping. When he wakes up in the morning his stomach is not distended but as the day goes on with him eating and being given fluids through his tube he gets distended. I do not know if his food is just sitting there. When he had the stomach scan he only emptied at 40% in two hours, so I wonder if he is just having a hard time digesting his food.
As of right now we have two appointments, we are going to neurosurgery on July 20th. Hopefully we can resolve his head pain. On August 24th, he will be getting his Mic-key button placed. Neurology wants to do another Lumbar puncture, but we do not have a date for it yet. I say we wait to see what neurosurgery has to say.
We are going to get to do some fun stuff this month; we are going to Kings Island with Adventures for Wish Kids on Thursday July 6th. Alex is very excited about this trip. We also are going to attend the MPS conference on July 27th -29th. We got very lucky because they are having it in Covington which is about 30 minutes from my house. We get to see many friends that we have met in the MPS community.
My mom is doing great she is in rehab from the stroke. She is making great progress. She is using her right leg. She has been eating and is able to drink liquids that are not thickened.
As always thanks so much for taking the time to check in on Andrew. We look forward to reading his guest book.
Wednesday, June 28, 2006 5:11 PM CDT
Sorry I have not updated sooner.
Our GI appointment went well. Andrew's diet is pretty good. He is receiving everything he should, meaning he is getting enough fiber, etc. We have increase his liquid intake from 40 to 50 oz. a day. He is getting the majority through his g-tube. We are giving him chocolate ex-lax for the next 2 weeks to get him cleaned out and to see if he starts having bowel movements regular. He also is getting 17 grams of Miralax a day. We are thinking that he is just not moving his foods. He is still maintaining his weight.
Tuesday morning Andrew had his g-tube half way out. At night he cannot get comfortable he tosses and turns. He is up and down all night. I guess he pulled the bar that holds it in place down. Colin got it put back, but we had to go to the ER so they could run dye through his tube to make sure all the fluid was going to the right place. Everything turned out ok.
Friday we go to Cardiology. We also finally have an appointment to Neurosurgery, it will be July 18. I had to get all his head measurements since birth.
My mom is being moved to rehab today.
Thanks so much for all your love and prayers. 
ALEX
Thursday, June 22, 2006 6:25 AM CDT
We are going to GI today. Andrew is still having problems with bowel movements. We have been giving him the max of Miralax and also prune juice. We think he is having a hard time breaking down his food. Hopefully we can get him moving again without the help of more medicines. He is still not sleeping. He goes to the heart doctor next week.
My mom’s stroke was major. She cannot talk or use her right arm. She has already started speech therapy.
Alex is doing really well. He is playing T-ball this summer. He is having a blast.
I will update when we get back today.
Thanks so much for your prayers.
Monday, June 19, 2006 8:11 AM CDT
Since my last update Andrew had another Lumbar puncture on the 14th of June. His pressure was 22 again. He has been relatively calm through the day. But his nights are still horrible. I do not know what we are going to do to help him sleep.
They want to schedule him another Lumbar puncture for July. I do not feel I trust them anymore to do this. He was given sedation again without our permission after the procedure. He had to be given oxygen.
We have started to taper him off the Trileptal. The Mirtazapine made him more aggravated. His appointment for Cardiology is June 30th.
My mom was doing pretty well. She was scheduled to come home today. But she has taken a turn for the worst. Yesterday, she had a stroke while at the hospital. We had her transferred to a different hospital. Please keep her in your prayers.
Brianna is doing really well. Please continue to pray for her. She is still in the hospital but they hope to bring her home this week.
Again thanks so much for your support.
Saturday, June 10, 2006 9:59 AM CDT
Andrew is still maintaining his weight. He is still at 72 pds. Some day with liquids he does pretty well by mouth but on other we have to rely on the g-tube. He is still eating really well.
Sleep and pain continue to be big issues for him. There is so much not known about Sanfilippo it is so frustrating.
His wheelchair needs to be modified, he has grown so much. We deal with Burlington Health care they will be out Monday.
We went to see Andrew’s neurologist on Friday. He seems to think that what Andrew is doing with the staring to the right and circling movement is not seizures. He actually thinks that it has to do with the storage in his brain, but could not tell us exactly what and why.
He wants to take him off Trileptal because he feels that it is not doing him any good and it also messes with his sodium levels. We will take 1 ml away a week for the next 14 weeks.
He wants to start Andrew on Mirtazapine along with the Amitriptyline for sleep. Has anyone had any experience with Mirtazapine?
We are still waiting for them to schedule the LP. Dr. Gilbert asked what we thought about giving Andrew a LP every month. He wants to see if we can keep his pressure at a comfortable level for him. I'm not sure how I feel about that because he will have general anesthesia every time. He has not had any problems with anesthesia but to put him under every month is a little to risky for me. I just do not know. I know this might give us answers to what needs to be done to help Andrew but it is very scary.
His blood pressure was high again yesterday; they took it twice: 124/98, 127/92 and heart rate both times 137. We are going to make an appointment with his cardiologist to see what they think.
My mom is still in the hospital but she is doing really well. We hope to bring her home sometime this week.
Thanks for all your love and support!! You guys are the best!!!
Wednesday, May 31, 2006 6:40 AM CDT
Sorry it has been a little while since I have updated. Things have not been going well at my house.
Andrew's check-up for his tube when great. He is doing really well with it. He gained back 4 of the 10 pds. he had lost in a week. The doctors could not get over how good he looks now. We got to give him his first bath last night. I imagine that made him feel wonderful.
However he is showing some discomfort. We think it is coming from his head and not his stomach. He is pacing and not sleeping again. He is grabbing the back of his head a lot and having staring seizures. I took his heart rate it was 140. He is moaning and trying to cry.
We spoke with the neurologist on call, she asked us to take him to the ER. I knew that would be pointless because if he needs a LP or/and a CT scan he would need GA not sedation. It was also Sunday during a holiday weekend.
While we were in the ER his heart rate shot up, 178 was the highest at times. They check his g-tube no problems there. So the pain most certainly is coming from his head. They increased his seizure meds to 12 mls instead on 9 mls. Then they send us home and told us to make sure to call his neurologist. I'm still waiting to hear from them.
His nurse is coming out to check him today.
My mother is in the hospital also. She had severe pain Friday night and her blood pressure dropped. She went into shock. Her stomach was swollen. They gave her two CT scans and nothing showed up. They put a N-G tube down her nose. She seemed to be doing pretty well Saturday. On Sunday things changed rather quickly. She went into shock again. She had to be placed on a vent. They decided to do emergency surgery to go in and see what was going on in her stomach. It was a good thing they did. She has an obstruction in her bowels from scar tissue. Two feet of her bowels were dead. They took that out and she had a cyst on her ovaries. They told us the first 48 hours were critical. They were very worried about getting her off the vent.
My mom is a fighter. With all the odds against her she was taken off the vent yesterday and stayed off. I LOVE YOU MOM!!! She had a stoke right after Andrew was diagnosis which left her blind. She was diagnosis with lung cancer and has been in remission for 2 1/2 years. She still has a long road ahead of her but she is truly remarkable.
Thanks everyone for checking in. We are truly blessed to have so many wonderful friends.
Sunday, May 21, 2006 4:04 PM CDT
Thanks everyone for your love and support. Without you we would be lost. MPS and ML diseases are horrible!! In our journey with Sanfilippo we have found that there are many times that we will struggle with the decisions that we have to make. It is wonderful to have so many friends and family around us to give us the support and love that we need.
Andrew cam home from the hospital Friday. He now has a g-tube to help with the dehydration issues he has been having. The surgery itself when smooth. However he started having a hard time in recovery. His blood pressure began to rise and his heart rate keep dropping. Thank goodness he was able to recover. They did not have to give him any reversals. Then he had a reaction to the morphine they were giving him for pain. But once they took him off it he started to improve.
He also was impacted so they cleaned him out while he was a sleep. We are giving him Mirlax twice a day now. Today he has had three bowel movements so far!!
I think having him hydrated is making a hugh difference. His body temperature has improve and he just looks healthy again. I pray this takes care of some of his pain issues. Dealing with the g-tube is not too bad. Colin is already the pro at it. I'm still very nervous with it.
For some reason he does not want to walk. He is just content to sit. I do not know if it hurts for him to walk or if he just is the progression of this horrible disease.
Yesterday, we went down to Bowling Green Kentucky. We spent the day with 2 other MPS families, Brianna Bays and her family and Hailee Green and her family. Hailee's family put on a benefit bowl to raise money for research. We had a wonderful time. I have posted pictures in the album check them out.
Again thanks so much for you love, prayers and support.
Monday, May 15, 2006 4:02 PM CDT
Andrew's g-tube will be placed this Wednesday at 11:30 am. He still is not having bowel movements without help. I gave him Mirlax this morning and I will be giving him more tonight.
If he does not go then I have to call the hospital in the morning.
I will keep everyone updated when I can. Please pray for my sweet baby.
Saturday, May 13, 2006 6:59 AM CDT
Well things are not getting any better for Andrew. He is eating and drinking less than before. We took him off the Erthromycin because we really did not see any benefits from taking it. He has not pooped on his own for 8 days now. Today alone we gave him mirlax, glycerin suppositorie and a emema. We went to the hospital and got an x-ray of his stomach. It showed he was really backed up.
The hospital is trying to move up his G-tube placement. We should know Monday when that will be. We have not got the results back from the Celiac test. Still waiting to hear hopefully it will be sometimes this week. I will post what room Andrew will be in while we are at the hospital.
We are still waiting to see neurosurgery. He is still showing discomfort with his head. He also is still doing the focal point to the right and following it around in a circle. When sits down he will try to do the same while he is sitting. I will keep everyone updated.
He has not been sleeping well but with all his stomach issues I'm sure that is play a big part of him not wanting to sleep.
Again thanks so much for stopping by and checking in on Andrew. We love reading our guest book. Thanks for all the advice we love you all.
Friday, May 5, 2006 8:01 AM CDT
Thank you so much for praying and thinking of Andrew. Hopefully we are on to something with him.
We had our Gastric Emptying Scan on Tuesday May 2. The test was not as bad as we expected. Andrew had to eat a peanut butter and jelly sandwich, then he ate a scrambled egg with some radioactive material in it and finally he was able to wash it all down with some apple juice with the same radioactive material. Then they took pictures of his stomach. We had to get pictures take every half hour for 2 hours. So we only had to hold him down four times for 1 minute intervals.
The test showed us how slow his stomach is digesting food. With solids he is at 40 %, he should be at least 60 %. With liquid he was fine at 77 %.
Some foods are more difficult than others for the stomach to digest. Fatty foods take a longer time to digest, as do foods that are fibrous, like raw vegetables. He is going on a low-fat diet. Fortunately, even when stomach emptying is significantly impaired, thick and thin liquids (e.g. pudding and nutrient drinks) are usually tolerated and can pass through the stomach. So we have added a lot of pureed foods to his diet.
So he has been put on Erythromycin. Erythromycin is a commonly used antibiotic that binds to receptors in the small intestine and stomach called ¡§motilin receptors¡¨. Stimulation of motilin receptors results in contraction and improved emptying of the stomach.
We are still scheduled (May 22) for the feeding tube placement but if he responds well than maybe we will not have to do this now. He does not have a gag reflex so we have to make sure he does not get choked.
It will be two weeks before we get the test back for Celiac disease.
We have gone back to Amitriptyline 50mgs (Elavil). Last night was our second night on it and he is sleeping. This is great news!! Hopefully this will last a while. We actually got a smile yesterday!! ļ
We are still waiting to see neurosurgery. He is still showing discomfort with his head. He also is still doing the focal point to the right and following it around in a circle. When sits down he will try to do the same while he is sitting. I will keep everyone updated.
Again thanks so much for stopping by and checking in on Andrew. We love reading our guest book. Thanks for all the advice we love you all.
Friday, April 28, 2006 4:33 AM CDT
We only saw one day improvement after the LP. He slept really well the night of but has only slept about 1 hour a night every since.
He is showing a lot of discomfort. I think his head and stomach hurts him. We are having his gastric emptying scan done on Tuesday, May 2 at 9:30.
His biopsies have came in. They could not find anything wrong with his esophagus. Still do not know why it is red and irritated. However they did find a problem with his small intestines. They are going to give him blood test Monday to see what is going on. Celiac Disease was mention.
We are still waiting to see neurosurgery. I hope we can see them Tuesday while we are at hospital.
Thanks everyone for your prayers and support.
Saturday, April 22, 2006 7:27 AM CDT
Where do I start, Andrew is home. We brought him home late Wednesday night. He has only has 4 bowel movements so it was felt whatever is going on with him it was coming to an end. He did not have a bowel movement on Thursday and had a normal Sanfilippo bowel movement on Friday. He also had a normal bowel movement this morning. He have some Flagyl in case the diarrhea starts up again. All his test show no sign of any bacterial or viral infection.
He went through anesthesia with flying colors for his test on Wednesday. The first test was the Lumbar Puncture it showed a high reading of 22. We are being referred to a neurosurgeon. There is very little information regarding shunts and Sanfilippo Syndrome.
His endoscope showed that his esophagus was red and irritated. Which could mean possible reflux. His stomach and everything else look fine. They took biopsies. We should have the results from the biopsies this coming week.
They are going to do a gastric emptying scan to see how delayed his stomach is. They need to know this before they place the g-tube. We are going to wait to see what his biopsies show before we move forward with this. If he does have reflux this could be a reason he does not want to drink.
Thanks to everyone for your prayers and support without them we would be lost.
Tuesday, April 18, 2006 5:39 AM CDT
MONDAY
Andrew has been admitted to the hospital. He is dehydrated. His blood work is all out of whack. We are waiting for the stool test to come back. They are checking for a virus. He has had diaherra since last Wednsday.
They gave him 1000 ml of fluid while we were in the ER. We finally got to him room at 7:30 tonight. I'm home with Alex, daddy stayed with Andrew. I will be going up through the day and coming home at night to be with Alex.
They will be keeping him so they can get him well for his test Wednsday, the endscope and LP. He will be sedated.
He was eating a hamburger when I left.
Thanks so much for thinking and praying.
TUESDAY MORNING
Just talked to Colin, Andrew had a very rough night. He has only sleep 2 hours. He ripped out his IV. They tried to put one back in and could not find a vein. They will try again today. He has pooped everywhere all night long.
His bicarbonate is really low.
I'm getting ready to leave to go up. I will update when I know more. The stool test have not came back yet.
TUESDAY NIGHT
So far all the stool test came back negative. His blood pressure is high and he still is very uncomfortable. Still has diarreha. They are giving him something to help with the pain.
His LP and endoscope will be this morning at 12:00. I will update everyone when I know more.
Please keep him in your prayers.
Tuesday, April 4, 2006 10:53 AM CDT
Our trip to the Pediatric surgeon went well. She did ease our minds a bit. Andrew still has not improved with his liquids.
We had Andrew’s upper GI yesterday; it took a long time for him to empty his stomach into his small intestines. However, he was very upset about the procedure. We had to hold him down the whole time, 2 ½ hours with a couple of breaks. We had to walk around for hour and then go back to take an x-ray to see how things had moved.
Now we are waiting for them to schedule the Lumbar puncture and the Endoscope.
We have started to wean him off the Seroquel. He has developed some strange movements with his mouth. We are not sure if it is the result of the seroquel, but since it is not helping him sleep, we have decided to pull him off it.
Thanks to everyone who has stopped by to check on Andrew and for the many prayers.
Thursday, March 23, 2006 6:41 PM CST
Andrew continues to struggle with his fluid intake. He has not hit his required amount since Feb. He is scheduled for an upper GI on April 3. His GI doctor will be back in town. I hope we can find some answers to what is going on with him.
We are meeting his surgeon on Tuesday March 28. He is scheduled to have a feeding tube placed on April 26.
Of course we are very worried about the feeding tube. We are worried on how he will react to it. He is still active. We are so afraid he will pull it out. I also am very worried on how we can keep him still long enough for the feeds.
He is still not sleeping throughout the night. He is constantly up and down throughout. He actually falls asleep while sitting up on the corner of the couch. He can't seem to get comfortable.
His neurologist increased his Seroquel from 75mg's to 150mg's at nightime and we have yet to see any improvement. He seems to be doing the focal staring and walking clockwise in a circle more frequently. We are at a loss and we think his doctors are also. We wish they could give us some answers. Hopefully they will be able to pinpoint whatever is bothering Andrew. We can only pray.
Thanks so much for checking in on Andrew!! Please let us know you were here. We love reading his questbook!!
Thursday, March 16, 2006 5:00 AM CST
Unfortunately with this update things are not going any better for Andrew.
Andrew will be having and Endoscopy as soon as possible. They are wanting to examine his esophagus (swallowing tube), stomach, and duodenum (first portion of small bowel) using a thin flexible tube that can be looked through or seen on a TV monitor.
We are hoping this will give us some answers to why Andrew is struggling. If they cannot find anything wrong they want to go ahead and put a feeding in while he is sedated.
I'm a nervous wreak about this. I will update when I know more. Please keep him in your prayers.
Wednesday, March 8, 2006 6:59 AM CST
Andrew is having a hard time sleeping again. We have seen some swelling in his face and feet. His stomach looks distended at time. (very large) He is having bowel movements daily, but they are play dough constancy and sometimes little hard balls. We tried gas relief drops but they did not seem to help. His eating is good, we are still feeding him pureed food and regular food mashed up. With his drinking we have at least 3 days a week where he does not want to take the amount he needs.
He has started the focal point to the right and following it in a circle again. It is becoming more frequent. We are also concerned about his weakness on his right side. He is falling down frequently , like he is unable to keep himself balanced. He still is grabbing the back of his head.
We took him to his pediatrician to have his ear, nose, and throat to see if he had any thing going on. He did not, however he did say that his gag reflex was minimal.
Please continue to pray for my little guy. Thanks for stopping in!
Saturday, March 4, 2006 8:49 AM CST
Sorry it has been a while since I updated Andrew’s page. Life has been so busy. I have been finishing up with my degree. I had my last class of Thursday. I have to start doing an internship; I have to have this done by the end of March. I am trying to find something that pays but so far have not had any luck. I have another interview on Monday.
I have been stressing out. Everything is going to change in our life. Colin has to give up his job he has had for 19 years. He has found a third shift job but he is worried also about all the change. I have to be available through the day. I pray that all the decision we are making are the right ones.
Andrew has been having good day and bad days. His biggest problem is liquids; there are some days that he just does not want to drink. We had to take to him to check his weight. The doctor checked his gag reflex and it was minimal. We are keeping a diary of his intake and output. He is eating really well; we still are giving him pureed foods.
His sleep is doing some better; he is sleeping about 6 hours a night, which is a big improvement from 6 hours in a week. We cannot wait until it gets warmer so we can get him outside more.
Alex is doing really well. We are signing him up for soccer. I am a nervous wreck about this; Daddy is going to take him. I just hope he does not get hurt. He cannot be my bubble boy forever.
Please remember all our MPS/ML children and families that have lost their children in your prayers. Thanks for coming by and checking in on Andrew. Please remember to sign Andrew’s guestbook.
Thursday, February 16, 2006 4:40 AM CST
Andrew is slowing doing better. He is eating and drinking which is a blessing. We are still modifying his food and drinks. He is sleeping about 6 hours a night and seems not to be in a lot of pain. He still shows some discomfort. He was put on a antibiotic because Alex has strep. We just want to make sure he does not get it.
Thanks to everyone for all your thoughts and prayers. Your acts of kindness and love are so thoughtful.
Saturday, February 4, 2006 6:27 PM CST
We brought Andrew home from the hospital on Thursday. We have been trying to catch up ever since. It is great to be home with my family under one roof. My mom and dad have been keeping Alex for us.
The virus he had knocked him for a loop. The doctors think that Andrew has been compensating for so long that he has reached the point where his body is unable to compensate anymore; causing him to regress in skills. His weakness on his right side is still a concern. They seemed to think that he was possibly having a stroke or even mini-strokes. The CAT scan did not show any signs of strokes. There was also no change in his ventricle size.
He is swallowing soft foods and liquids, which is a big improvement from what it was earlier in the week. His renal count had improved , they were at a critical stage. We have to make sure he clears his mouth. He is a higher risk of choking. We have to monitor his eating and drinking habits. If he struggles to maintain then we will have to put a g-tube in for maintenance. This will lessen the fear of dehydration.
He is sleeping better with the increased dose of Seroquel. He still seems to be uncomfortable when it comes to lying down.
Thanks everyone for all the kind words and prayers. We are at a lost of words over the kindness that has been shown to our family. How can we ever repay such kindness? We have been truly blessed to have such wonderful and caring friends. God bless you all!!
Monday, January 30, 2006 4:59 AM CST
Andrew is back in the hospital. They are trying to figure out what is wrong with him. He started two weeks ago with vomiting and diarrea. This lasted about a day and a half. He started not wanting to eat or drink. If he had a virus I would think that he would not feel like eating. We forced him to take some liquids and gave his some baby food. He had not sleep at all for three day. He has been very restless and agravated. Showing us a lot of discomfort. We took him to the hospital on Jan. 22nd. Neurology admitted him for about two hours, gave him a new sleep medicine and said he should start to feel better that it was virus. We came home with him.
He continued to struggle with his food and liquids. He would not swallow food or liquids. By Tuesday Jan 24th, I was getting pretty worried about him being dehydrated. He was not vomiting or having dirarrea. So we called his doctors and back to the hospital we went. They admitted him. He was very dehydrated. He was hooked up to fluid. His dehydration got better but his desire to eat or drink had not came back. We were saw by the feeding team and the GI doctors they gave us the guidelines that Andrew needs to follow to keep him maintained. If he cannot keep up the quidelines then we will have to think about placing a feeding tube in him. He was also seen by pain managment who needs to get more information about Andrew condition. We still think that the pain he is having is coming from his head. But it seems we are not able to comvience anyone else of this. We were dismissed from the hospital.
We brought him home from the hospital hoping he would turn the corner and start getting better. He has only gotten worse. His pain is much more intense. He is just walking in circles. He had a small spit up over night Sat. and has been having mucus in his stools.
We took him back to the hospital yesterday. He still does not want to eat or drink. He is still just holding solid foods in his mouth. We are praying they find out this time what is causing him so much pain. They are going to do a CAT scan of his head, x-rays of his mouth and belly. Hopefully these will give us some answers on what is going on with our baby.
Please continue to pray!!!
Saturday, January 21, 2006 7:20 AM CST
LASTEST RESEARCH ON MPS IIIB
AVV-mediated Gene Therapy for Neurological Disease of MPS III B Using a Knock-out Mouse Model
Haiyan Fu, PhD.
Center for Gene Therapy, Columbus Children’s Research Institute
Department of Pediatrics, Ohio State University
Mucopolsaccharidosis (MPS) IIIB (Sanfilippo B) is an inherited lysosomal storage disease. This genetic defect leads to the absence of a lysosomal enzyme, a-N-acetylglucosaminidase (NaGlu), which results in the accumulation of a gllycosaminoglycan (GAG) in cells. Patients with MPS III B have only mild somatic involvement, but suffer severe progressive neurological disorders, which is the cause of high mortality and premature death. The neurological pathology in MPS III B is global, i.e., throughout the central nervous system (CNS). No treatment is currently available for MPS IIIB.
We have been studying gene therapy for treating the neurological disorders of MPS IIIB, with the support of NIH, and the MPS community through Ben’s Dream-The Sanfilippo Research Foundation and Children’s Medical Research Foundation. We made an adeno-associated virus (AAV) vector (vehicle carrying genes into cells), containing the gene of normal human NaGlu, which is missing in MPS IIIB patients. In previous studies, we showed that this AAV vector mediated the production of NaGlu (the enzyme missing in MPS IIIB patients) and the correction of the storage of GAG in cultured human and mouse MPS IIIB cells. We also injected the AAV vector directly into MPS III B mouse brain, and demonstrated the long-term, but only localized production of the missing enzyme. However, direct injection has limit in treating MPS IIIB, since the disease involves the entire CNS.
The most critical issue in developing treatment for the CNS diseases in MPS, is to be able to deliver therapeutic reagents (AAV vector) to the whole CNS or Brad areas of the brain, and not to just a localized area. The major obstacle is the presence of the blood-brain-barrier (BBB), which prevents large molecules, such as AAV vector and NaGlu enzyme, from entering the CNS. Our research efforts have been focused on two major aspects of gene therapy for the treatment of MPS IIIB Sanfilippo B). First, we must achieve widespread distribution of the AAV gene delivery vectors in the central nervous system (CNS). Second, we have been assessing the therapeutic impacts of AAV vector carrying the NaGlu gene on CNS disorders in the MPS IIIB mouse model. Our long=term foal is to develop AAV gene therapy for treating the neurological disorder in MPS IIIB patients.
It is worth noting that the BBB is closed at birth in human but not closed until 21 days of age in mice. In our previous studies, we developed two non-invasive approaches to deliver AAV vectors into the CNS of Adult mice. We established and intravenous (IV) injection procedure that achieved a global distribution of AAV vector throughout mouse CNS, by pretreatment using IV infusion of mannitol to temporarily disrupt the blood-brain barrier (BBB). We also demonstrated a broad spread of AAV vector in the CNS by an intracisternal (IC) injection. These results offered us more effective means to deliver AAV vectors into the CNS for MPS IIIB therapy.
We used the above procedures in AAV gene therapy studies in adult MPS IIIB mice. The mice were treated with AAV2-hNaGlu vector by an IV injection, an IC injection, or a combination of IV and IC injection. The AAV vector resulted in the production of NaGlu enzyme in the brains of all the IC and IV IC-injected MPS IIIB mice. The NaGlu enzyme subsequently decreased pathological lysosomal storage in these treated MPS IIIB mouse brains. The IV vector injection lead to the clearance of lysosomal storage in liver, and partial correction of storage in other somatic tissues. Most importantly, these treatments significantly prolonged the lifespan of MPS IIIB mice to 9.2-15-9 months (IV injected), 10.3-21.5 months (IC injected), and 11.1-19.5 months (IV IC injected), while non-treated MPS IIIB mice only lived 7.9-11.0 months. Normal mice live longer than 2 years. Furthermore, our results also showed improve behavioral performance in 72f IV IC treated MPS IIIB mice. These results suggest treat the AAV gene therapy procedures in this study greatly slowed down the progress of the CNS disease in MPS IIIB mice, through it did not effect a complete care. The data gained in these studies showed the potential for using AAV gene therapy to treat MPS IIIB.
We considered all the factors for future human application in designing the animal experiments in our gene therapy studies. As mentioned above, both IV and IC injection are non-invasive and routine medical procedure. We calculated the amount of mannitol and the volumes of injections based on dosage commonly used in patients. In addition, the therapeutic effect is long-term; we may not need to repeatedly give the treatment to MPS III B patients. Currently, the IC injection and the combined IV plus IC injection of AAV vector are more efficient than IV only for treating MPS IIIB. We are continuing our efforts to improve the efficacy of AAV gene therapy for the CNS disorders of MPS IIIB, by optimizing the vector injection approaches as will as testing them in larger animals, and enhancing the enzymatic functions of AAV-medicated NaGlu to maximize its therapeutic effects.
Although we continue our research to improve the therapeutic efficacy of AAV gene therapy on MPS IIIB in animal model, we feel that we have a therapy that provides meaningful benefits in our MPS IIIB animal model. We have designed the animal therapeutic model so that it can be applied to human clinical therapies. WE feel that the time has come to consider translating our AAV gene therapy procedure(s) from mouse studies into human clinical application.
Saturday, December 31, 2005 7:21 AM CST
We had a wonderful Christmas!! Andrew has been laughing which has been the greatest gift we could received!! My family came to our house for Christmas. We had a great time.
Andrew is still doing really well. He still is having some problems with his bowels, we go to the GI doctor on January 26.
Thanks to everyone for praying for our family.
Wishing everyone a wonderful New Year!!
Saturday, December 24, 2005 6:59 AM CST
Andrew is feeling some better. He does not seem to be in pain. Thank you Lord! He is sleeping pretty well and is eating like a little horse. I hope that having the teeth remove we have eliminated some discomfort for him.
We had a bad couple of weeks after his teeth were removed. We had to take him off the topomax, he started freaking out on us. His bowels refused to move for two weeks even with Miralax. So we gave him Raglan for three days and it has seem to help. He has been having bowl movements regular again. Once we got his bowels moving he started to turn the corner and started feeling much better. His sleep also greatly improved. We are giving him Amitriptyline to help.
We have backed of the shunt placement to see how things work out. Most doctors feel the shunt would cause more pain and problems.
Alex is awaiting Christmas. We are having my family over for Christmas. There will be a total of 18 people. I have a lot of cooking to do.
I want to thank each and every one of you for checking in on Andrew. Without your love and support, life would not be the same. God continues to bless us in so many ways. Happy Holidays!!
Thursday, December 8, 2005 8:13 AM CST
I am sorry it has been a week since I updated. Andrew did great through his dental surgery. It took 2 1/2 hours. They removed six of his baby teeth. I cannot imagine the pain he must have been having. We are hoping he will not grind his permanent teeth as bad when they come back.
He is still having a hard time sleeping. We were hoping to see improvement with his sleep. I still praying that we do not have to do a shunt I am very scared of the outcome. We have talked to two other families that they both told us to avoid the shunt if possible.
He has been having some G.I. problems. His bowel movements have been less frequent. We have been giving him Miralax. He also started Reglan to increase the rate at which the stomach and intestines move during digestion. It also increases the rate at which the stomach empties into the intestines and increases the strength of the lower esophageal sphincter. We are only using Reglan for short-term use. There are many side effects associated with it.
Alex is doing well. He got quite an honor; he was Student of the Month for November!!! He is waiting for Christmas to be here. Every time it snows, he asks if Santa Claus is coming.
Thanks so much for all your love and support. It means the world to us. I want to say a very special Thank you to Bernie and John. You are angels that walk the earth. To our Hospice team what would we do without you? You all are the greatest. Thanks so much for sitting at the hospital with us and help us with Alex.
To my angels in heaven, Christian and Cody, they would have been 15 yesterday. Mommy misses you and loves you very much. Happy Birthday Sweethearts!!!
Wednesday, November 23, 2005 6:54 AM CST
Andrew has continued to show no improvement from the last LP. We took him to the ER on Sunday because he was so pale and moaning in pain. They gave him 700 mls of caffeine sodium benzoate. They were treating him for low pressure. He is not doing any better.
We took him to the pediatrician on Monday to rule out strep, ear infection or anything else that could be affecting him. They could not find anything. The doctors are not convinced that he needs a shunt.
I finally got them to contact Dr. Goodrich in New York. He is an expert on Hydrocephalus and MPS children. I am sure we will not know anything because of the holiday.
When it rains it pours!! That is becoming my favorite saying!!
On our way to the pediatrician office, our truck started knocking. We were told yesterday that it needs a new engine and all the work is going to cost $6000.
We do not know what path to take next. Please pray for guidance for my family.
Friday, November 18, 2005 4:18 AM CST
Well as I report that the LP went well. Andrew did a great job with general anesthesia. His pressure is high it was 22! The took 25 mls of spinal fluid off. He woke up right away and we were ready to come home.
With a Lumbar puncture, Andrew needed to lay flat for 1-3 hours after the procedure. Well he woke up right after and did not lay flat. So now he is suffering from a spinal headache. They also think that they took to much fluid of and he is suffering from low pressure. : (
Yesterday he started eating and drinking better. He still is pale. He shared his laughter with us a couple of times.
He tried to run but when he did the result was always a fall. He is wandering around still and has to sit up to sleep.
We are giving him Diamox again. We are trying it for 6 days to see if it helps any.
Thanks so much for all your love and support. Without it we would be lost.
Tuesday, November 15, 2005 8:06 AM CST
Well Andrew had his lumbar puncture yesterday. He did very well under general anesthesia. He woke right up. Thanks to everyone for your prayers.
Now to the bad news his pressure was 22, which is high. They took 25 mls of fluid off his brain. We cannot keep doing LP’s every month so we are going to have to look at possible intervention.
His neurologists mention yesterday that they are going to do the Intracranial Pressure monitoring. There are three ways of monitoring intracranial pressure:
Intraventricular catheter (a catheter threaded into one of the lateral ventricles of the brain). A subarachnoid screw or bolt (a screw or bolt placed just through the skull in the space between the arachnoid and cerebral cortex) A subarachnoid screw or bolt is a hollow screw that is inserted through a hole drilled in the skull and through a hole cut in the dura mater.
Epidural sensor (a sensor placed into the epidural space beneath the skull).
Andrew will be intensive care while undergoing the ICP. There are risk associated with ICP, which are infection, bleeding, damage to the brain tissue with residual neurological effects, risks of general anesthesia and inability to locate ventricle and accurately place catheter.
I will update when we know more. Thanks everyone for all your prayers and support.
Friday, November 11, 2005 4:47 AM CST
Hello everyone!
We have heard back from neurology, they are going to re-tap (Lumbar puncture) Andrew on Monday at 2:45pm. They are going to use general anesthesia instead of sedation. Andrew had a big problem with the sedation last time.
His symptoms he had pre-lumbar puncture are coming back. He is not wanting to eat or drink. He cannot lie down to sleep. His urine output has also dropped. He is having a hard time walking.
Please pray for him and our family. We are very nervous about this and the possibilities.
Things have been very difficult for us. We have missed a lot of work and they have also cut Colin’s hours at work. What is that old saying “When it rains it pours.” I talked to my school about dropping out for a while, but I only have three months left. Therefore, they told me just to do what I can. Why does life have to be so hard?
If anyone feels that they can help my family please contact us.
Tuesday, November 8, 2005 8:24 AM CST
Andrew has stopped eating and drinking again. We pulled him of the diamox to see if that is the problem. He is also leaning really bad and has a hard time walking. He also is not wanting to sleep again. Waiting to hear back from neurology on what to do next.
Will update more later.
Saturday, October 29, 2005 4:05 PM CDT
Andrew went for his check-up at neurology. They were very surprised how well he still is doing. He is eating like a little piggy and has gained back 5 of the 8 pounds he lost. His laughter is contagious!! He has been making sounds. He is trying to say some words. He still has to sit up to go to sleep but he ends up lying down in bed.
They feel since he is still doing so well and his pressure reading was high normal. That he probably has hydrocephalus ex-vacuo.
Hydrocephalus ex-vacuo involves the presence of too much CSF, although the CSF pressure itself is normal. This condition occurs when there is damage to the brain caused by stroke or injury, and there may be an actual shrinkage of brain substance. Since he has a storage disease that the storage is probably interfering with the absorption of CSF.
Shunts are not useful in the management of these patients and carry a substantial risk of subdural haemorrhage if implanted.
He is starting diamox which is a potent carbonic anhydrase inhibitor, effective in the control of fluid secretion (e.g. some types of glaucoma), in the treatment of certain convulsive disorders (e.g. epilepsy), and in the promotion of diuresis in instances of abnormal fluid retention (e.g. cardiac edema).
We pray the diamox keeps him happy. I do not want to see him in pain. We have given him Miralax for constipation this week. He is going to Shriners on the 10th of November. He still cannot use his right arm. His right leg is starting to draw in also.
Alex is doing wonderful. He is getting ready for Trick or Treat on Monday night. We are taking them to the Cincinnati Zoo tomorrow for HallZooween. He had his party at school and brought home so much candy. We went to the Double Stink hog farm and had a blast. I have posted some pictures in Andrew’s album.
Our MPS angels are working overtime with Colin. He and Alex had wrecked our car about 4 weeks ago and we just got it back last week. He was going to work last Saturday morning when a semi overturned in front of him. Another car slammed into the semi and Colin slammed on his breaks and when into the medium. He said he looked into his rear view mirror and saw a semi skidding sideways behind him. The semi hit the other semi. Nothing touched Colin or the car. He was so lucky. THANK YOU MPS ANGELS FOR LOOKING OUT FOR MY HUSBAND!!!!
I love for people that stop by to sign Andrew’s guest book. However, please do not leave large images in his quest book. It is taking a long time to load. I am sorry if this upsets anyone! Thanks for understand.
Friday, October 14, 2005 4:28 AM CDT
Well it has been a week since Andrew had his Lumbar Puncture. It is amazing how different he is. He is so much calmer and happier. He has not shown any pain all week. His sleeping is better but he still is tossing and turning. What do I expect a perfect world. LOL!! He is eating really well.
His neurologist called and we are going to start him on Diamox. We go back to see neurology on the 28th. We want to try to treat the hydrocephalus with out a shunt if possible.
Alex has been on Fall break from school all week. He is doing great.
The boys had their birthdays this week. Thanks to everyone that sent them birthday wishes. Thanks to Hospice of Northen Kentucky for making a donation to the MPS Society in honor of Andrew's birthday! We have not had a party yet.
On Monday October 17, the Gallatin County School system is having Casual Dress for MPS to raise money for a cure. They are doing this in honor of Andrew!!
On Wednsday October 19th, Alex and I are going to spent the day at the Double Stink Hog Farm in Georgetown Kentucky. I went with Andrew's preschool class also. I hope the weather is great.
As always thanks so much for keeping my family in your prayrs. Thanks for stopping by!!
Sunday, October 9, 2005 7:11 PM CDT
Thanks to everyone for all your prayers. We really needed them.
When we went to the neurologist Friday, we had no idea that he would admit Andrew. We were even expecting to have to fight tooth and nail to get them to do an LP.
I went to this appointment prepared to show how Andrew behaves. I took all the information that I could find, and a video tape of Andrew trying to sit up and sleep. To our surprise, Andrew was having one of his worst days yet.
When the neurologist walked into the room, he was talking about doing the LP and he saw Andrew and his discomfort and admitted him.
Once he was admitted we started going through the process of how they were going to do the LP on Andrew. Of course, we knew he needed to be sedated. It was decided that it would be done on Saturday around 10 am. The process took almost three and half-hours.
They could not get Andrew to go to sleep. I have noticed that each time Andrew is sedated it takes more and more to get him out. Well this time he felt the affects of it, he was over sedated and they had to use three reversal agents to get his heart and respirations back to where they should be. His heart rate dropped in the high 40’s and his respirations were at 10. Some of the nurses took Alex out of the room and they were prepared to go Code Blue. I was scared to death. The third reversal did the trick, which was a good thing because they had given him all he could. Thank you Lord!!!
He woke up about 6pm, ate, and drank everything in site. We took him for walks and he would just walk around and look at everything. Never once did he stagger or fall. We did not even have to hold his hand or carry him.
His pressure reading was 18, which they said was high normal. He was released from the hospital last night. Therefore, he got to be home for his birthday. We are watching him to see if he does better. I have already seen a difference in him. He slept better last night. He seems to be looking at things more intensely. He still cannot lay down to sleep. He slept good Saturday night. But Sunday night he did not sleep at all.
We have to go back to neurology; to see the course of treatment we are going to do with him. The doctor who did the LP said she could not believe the difference in him.
Please continue to pray for our family. Colin is starting a second job this week. I really worry about him. He passed out during Andrew's LP. We thing the procdure, the small room and the fact he had to wear a mask had alot to do with it. He would not go to the ER to get checked out. He is so hardheaded.
Saturday, October 8, 2005 5:14 AM CDT
Andrew was admitted to the hospital yesterday. They are going to perform the Lumbar Puncture this morning. Please pray!
He is at Cincinnati Childrens room 703!
Wednesday, October 5, 2005 9:37 AM CDT
This has been a very frustrating week for us. We have been waiting for the call of when they were going to do and Lumbar Puncture on Andrew.
Well that call came on Monday, but it was not the call we wanted to hear. The doctors decided not to do the Lumbar Puncture because all the risk involved and that they felt that Andrew does not have high pressure. They feel what they are seeing in him is the progression of Sanfilippo.
We saw his ophthalmologist yesterday and his eyes look fine. His nerves are flat.
The plan now is to go neurology Friday.
We are going his weekend to Chillcothe, Ohio to attend an MPS run for another MPS child. We look forward to going.
Andrew has started eating and drinking better. He still cannot lie down to sleep. He is sitting up to sleep and is sleeping about 1-2 hours a night.
Sunday and Monday are the boys’ birthday!! Alex is very excited.
Thanks for stopping by!!
Friday, September 30, 2005 7:23 AM CDT
We still have not found out what is causing Andrew’s pain! He is still having a hard time lying down. He is sleeping very little. He sleeps sitting up on the couch. He will sleep sitting up for 2 or 3 minutes then he will just up and start pacing around the room. This goes on all through the night. He is showing little improvement with eating and drinking. Nevertheless, he is still only having two wet diapers a day.
On Tuesday, he will see his ophthalmologist, they will be checking for papilledema, which can occur with hydrocephalus. Papilledema is swelling of the head of the optic nerve, a sign of increased intracranial pressure.
Hydrocephalus is an abnormal accumulation of cerebrospinal fluid in the brain. The fluid is often under increased pressure, which can compress (squeeze) and damage the brain.
He is being scheduled for a Lumbar Puncture. It will be next week, but we do not have the date yet. He will be sedated. A Lumbar Puncture is an invasive diagnostic test, in which cerebrospinal fluid is extracted for examination, and pressure of the spinal column is measured. If we cannot get a good reading they will do a fluoroscopy guided LP.
The treatment of hydrocephalus involves surgical insertion of a shunt to allow drainage of the excess fluid and relieve the pressure on the brain. The shunt is a flexible, plastic tube with a one-way valve. The shunt is inserted into the ventricular system of the brain to divert the flow of CSF into another area of the body, where the CSF can drain and be absorbed into the bloodstream.
While it is certainly not the most glamorous neurosurgical operation, shunting is one of the basic neurosurgical procedures, and has the highest failure rate. It has a relatively high complication rate and is probably the most common operation, which has to be redone for either malfunction or infection.
None of this is going to be easy on Andrew. Please keep him in your prayers. MPS is a cruel disease that has many obstacles that we have to cross. The strain that we have to go through daily is sometimes more than we can handle.
Colin had a wreck in our car yesterday. He had Alex with him. They are OK but there is $2200 damage to our car. When it rains, it pours. He is looking for a second job to help.
Thanks for stopping in to check on us. Keep us in your prayers.
Saturday, September 24, 2005 9:33 AM CDT
It has been a hard week again. Andrew is still struggling with the many issues.
We spent Thursday at the Emergency Room looking for some answer to what is causing him so much pain. We were there for 12 hours. We still do not know what is going on.
They gave him a pain block for the teeth that he has ground down. It did not do much to for his pain. We are waiting for them to get the surgery scheduled. His dentist is also on vacation for the next 2 weeks. : (
Our next step was a CT of his head. We had a difficult time getting him sedated. They had to use several different meds to get him out. He had a CT last October to check for hydrocephalus. It was our understanding that he did not have hydrocephalus. Well this CT showed that he does and has had since the last CT. The neurosurgeon told us that he felt that his pain was not caused by his hydrocephalus.
We spoke with Dr. Gilbert yesterday and he said that it shows progression of brain atrophy, or shrinkage, which creates a larger space that is filled with cerebrospinal fluid. He said this kind of "hydrocephalus" does not really cause headaches and is not treated with a shunt to drain fluid.
He wants Andrew to see his ophthalmologist. He said it would be a good idea to see someone for an evaluation for papilledema, which can occur with hydrocephalus.
We still do not know for such what is causing Andrew’s pain. He still is not sleeping and showing pain. He still is not eating or drinking unless we help him.
Most of his regular doctors are out of the office. I hope they come back in this week so we can get him in to see them.
Thanks for praying for my family.
Thursday, September 15, 2005 8:21 PM CDT
Hello everyone, it is me again. Wow, it has not been a month since I updated. I hope that means that I am feeling better and taking steps in the right direction. I can tell you that I did open the blinds today and let the sunshine in.: )
I want to say Thank you to my very special forum family!! Without you all I would be lost!! I love you guys!!!
We had to take Andrew to the ER last night. We gave him the Klonipin at 8pm on Tuesday night. Colin said he went to sleep quickly but toss and turned. He woke up yesterday morning and he just look out of it. As the day progressed, he would not eat or drink. He paced around the house just as if he was lost.
We started to get ready to go to dinner, we left and all of a sudden he started crying (no tears); not wanting to sit still (very anxious and nervous acting), you could see or his face a lot of discomfort. We stopped the van and got him out and he just keeps crying. We were thinking gas related that maybe it would pass. We got the restaurant in Cincinnati and he just keeps getting worse. Therefore, we decided to run him up to Childrens that is when he just went to sleep. He was out about 5 mins, and he came to and keep going our and in. we had to wait in the waiting room for over an hour just to be seen by a nurse by this time he was not acting this way. We waited another hour and haif to see a doctor.
So they said it was probably a reaction to the med to call our pediatrician this morning. On our wait home, the same things started happening again. Our first thoughts were seizures.
He slept very little as usual.
Today he has eaten a little (not to mention the molding clay that Alex was making plants out of ) and drank very little, his nurse came by and checked on him.
His pediatrician thanks it could possibly be reflux. We started him back on Previcid.
I hope that this will help. We have tried it before it seemed to help a little then he was back to not being able to lie down.
Alex has picture day at school!! I cannot wait to see how my baby did by himself.
As always thanks for stopping by.
Wednesday, September 7, 2005 6:55 AM CDT
Thanks to everyone for your continued prayers!! I am sorry it has been several weeks since I have updated. I have been dealing with some very strong emotions. We deal with these emotions daily, but sometimes they overtake you and the sadness is all you can think about.
Sometimes my life is too hard to handle. Sometimes I do not know how I do it. I think mostly I just go through the motions. Well here lately it has hit me like a ton of bricks. I do not know how to deal with these emotions. I am the strong one. I need to make sure everyone is taken care of. I have been like this all my life. Early in my life, it was dictated for me to be the protector. My dad was an alcoholic so I had to protect my mother. Therefore, I really do not know how to ask for help. All I know is to put of the protected walls so I can hide my feelings and pain. Well I have realized I can no longer do this. I am in the bottom of the barrel. I am not sure if I want to come out.
I have not wanted to do anything. I had to take two weeks off work. I decided to go to the doctor and they ran some blood test. I have found out I have diabetes. Wow a new problem to deal with. I do not want to do any anti-depressants; I have had some bad experience with them. I have reached out to Andrew’s nurse Renee. This is a big step for me. I told her how I was feeling and she said that had noticed that I was having a hard time. I hope that I will be able to release some of my feeling instead of keeping them all inside.
Andrew is still having a very hard time sleeping. We are functioning on a good night about 5 hours of sleep.
We took him to the dentist Friday for his check-up and found out that he has ground some his teeth down to the gum. He is going to have some dental work done under general anesthetic. . We do not have a date yet. Please keep him in your prayers.
He is walking less and less. Here at the house he will walk around some, but mostly he crawls now. This is so heartbreaking. When he is outside he will try to run but usually the outcome will result in him falling down. He wants Colin to carry him mostly. : (
Alex is doing well. I think the sleep issues are affecting him also. He loves school. He has made several friends. One of them came to the house yesterday and played with him. I overheard him asking her (Cori), if she wanted to come to his birthday party. He told her there would be lots of birthday presents. LOL!!!
I worry if we are giving Alex the life he deserves. With Andrew’s unique needs and the fact, that Colin and I work opposite shifts it is hard to take Alex out to do things he would enjoy. I feel so guilty about this. Unfortunately, out finance situation is a mess. Therefore, we have to work all the time. We do not even make enough to pay our bills. It seems the situation is getting worst instead of better. We just do not know what to do.
This Thursday is grandparent’s day or someone special day at school, I asked Alex who he wanted to go with him (the list is very short, daddy, mommy), he informed me he wanted his daddy and Andrew to go with him. I thought that was very sweet. Daddy is going to try to get off work early to go with him.
Thanks for listening. Please pray for my family. We are definitely having a very hard time.
I have put some pictures of Alex’s first day of school in the photo album.
Wednesday, August 17, 2005 6:44 AM CDT
Sorry it has been a couple of weeks since I have updated! Life has been very busy!
Alex started school last Tuesday; he is having a hard time leaving me! : ( It is taking everything in me to send him. He cries when he first leaves me but he gets better as the day goes along. He asked last week if Andrew would be here when he gets home. : ( I told him of course, we would not go anywhere without him. They told me that this would take some time for him to get use to starting school. It is breaking my heart.
Andrew is doing about the same; he is still not sleeping very well. He went through a spell last week where he did not want to eat or drink. He is doing a little better, but he still is not eating or drinking his normal amount. We are exploring every possibility. We took him and had his ear and throat checked. They are ok. We are taking him to the dentist on September 2; he grinds his teeth so I just want to make sure everything is ok.
He got his staples removed like a real trooper; yes, it took five people to hold him down and someone to remove them. We spend about hour after education three student doctors about Sanfilippo Syndrome.
I applied for a legal assistant position at a local law office; I did not get the job. Even thought I am doing well in school they wanted someone with more experience.
Thanks to everyone for all your prayers
Monday, August 1, 2005 5:57 PM CDT
What an exhausting week. We went to neurology last Monday and saw Dr. Gilbert. We really like him. We decided to take Andrew off of some his medicines to see if that would help with his nausea and vomiting. We took him of Clonidine first; he was on such a low dose that Dr. Gilbert thought that we could stop cold turkey. Monday night Andrew did not sleep at all and threw-up all night. The same thing happened Tuesday night. Wednesday he did not throw up but he seemed nervous His sleep was not very good, but he did sleep a little more.
Thursday when I was getting ready to go to school; Andrew was playing with a box, he was sitting on the floor when all of a sudden he jumped up and started to run and slipped on the box. He fell and hit his heard on the corner of the end table. It is on the right side of his head just above the ear. At first we did not think it was bad, and then we saw the blood. We got to looking at it and it was worst then we thought. We decided to take him to the ER knowing stitches would be very difficult. We got their around 6 pm, the waiting room was empty. Great!! We were called back to triage right away. They put a band aid with numbing gel on the cut on his head, and then we were instructed to go out front and wait. When we walked back to the waiting area it was full. I told Colin that we must have got there right before they got busy. That was not the case. All these people had been in triage and was waiting to be called back to see the doctor. We waited in the waiting room from 6:30pm till 8:00pm I thought maybe they had forgot about us. They just had many children needing stitches. Once we got back to the room, things happened very quickly. The physician that was on duty knew a lot about MPS so that was a plus. He did not get a good look at it, so Andrew had to be restrained. The only part of his body that he could move was his head. They called in an extra male nurse to hold his head. They started to clean it out, it turned out to be 1 ½ inches long and 1/16th of an inch wide. He told us that they would be using staples. I gasped, thinking Oh no! They did not numb it anymore; it was over in probably about a minute. We have to take him back, this Thursday to have the staples removed.
During this whole ordeal he did not cry once, after he hit his head he whimpered a little and then he was watching Little Bear again. I guess it is a good thing that he cannot feel pain. I feel so guilty that I let this happen; I am supposed to protect him.
He is still having a hard time sleeping but at least he is not throwing up anymore. Knock on wood that it continues. He still is on the thickened liquids. He does not like them very well but he needs them to be that way. We have had a couple of choking spells.
Alex is very excited about starting school nest Tuesday!! I'm going to miss him. But I know pre-school will be very good for him. I'm very excited for him, but yet my baby is growing up.
Thursday, July 21, 2005 8:59 AM CDT
Well it has been a week since we started giving Andrew his thicken drinks. He is not happy with the consistency at all. We have been helping him drink, or he will just throw his cup. Of course, now that he is not drinking a lot we have to watch for dehydration. The choking has improved a lot. He has choked on his food a couple of time, but I think he is storing his food and forgetting he has it in his mouth.
Andrew has not been very active this week. He has been sitting a lot and he leans more and more. Friday he was leaning so far to the left he was falling over. He has been crawling to get to some place that he can pull himself up on something. We also have noticed that is left eye is pulling toward his nose. His neurology appointment is schedule for Monday at noon.
He is still not sleeping very well. He does not get into bed before midnight, and then he tosses and turns all night long.
As far as the reflux, we started giving him Previcid last week and we have not seen and difference. He still is gagging and swallowing as if he wants to bring something up and cannot.
Last Saturday we attended the Ohio MPS family picnic. We had a great time. It was great to see the wonderful families again.
As always thanks so much for taking the time to check on Andrew. Thank you for all your thoughts and prayers. Please lets us know you stopped in by signing his guestbook.
Wednesday, July 13, 2005 8:15 AM CDT
Andrew went to the full feeding team and GI doctor today. We finally have some answers to what is going on with him. It is not something we were ready to hear. No one is ready to hear that their child is progressing in MPS. How can you prepare? We have to keep moving on, the world does not stop. Sometimes I want to scream at the top of my lungs; please slow down I cannot keep up!
As we had suspected his swallowing has gotten worse and his liquids are going down his airway. We are to start giving him nectar consistency liquids. They sell a drink called Resource that is pre-thickened. We are also going to be giving him Boost and Ensure. We are to offer him more puree foods. We are still able to give him some regular foods but they are to be torn up into small pieces.
Of course, things may change if he starts having more respiratory problems. We did discuss a feeding tube, but we do not feel right now it is our best option. Andrew has lost 5 pounds, but he still has gained 10 pounds in the last year since his last VSS. Therefore, we feel he is still getting good nutrition. His activity comes into play also, he has slowed down a lot, but he does have spurts of energy. We worry that he will pull it out.
He is being treated for reflux! We are going to start him on Prevacid. This is in powder form that we mix with water. I really hope this helps him.
He had a rough night last night; he did not sleep well at all. He was doing the usual tossing and turning. I could not get him to stay in bed, so he finally went down at midnight. He keep tossing and shooting up in the bed.
As always thanks so much for taking the time to check on our family. Thanks to everyone for your prayers. It means the world to us. Our life has too many uncertainties.
Sunday, July 10, 2005 2:30 AM CDT
I am very tired. Andrew has not been sleeping well at all this week. I have been sleeping with him, because Colin has to get up at 3 am. He was pulled over one morning for weaving, so I figured he was falling asleep so now I make sure he gets some sleep.
Andrew had his VSS on Thursday; it told us what we suspected. His swallowing is getting worse and he is high risk for aspiration. He did better with pureed foods. Therefore, we will start modifying his diet to purees. They also gave us samples of Simply Thick; it is a thickening gel that you cannot taste, we will be putting it in his drinks.
We go back Tuesday to the full feeding team and the GI doctor. Will let you know how this appointment goes.
Andrew has had some choking spells this week, nothing like last week. Thank goodness!! I hope that us modifying his diet is helping.
We are going to be taking him off the Amitriptyline; it is for sleep he is not sleeping so we do not see a purpose to keep him on it.
Alex is doing really well; he will start pre-school on Aug. 9. I cannot believe how fast he is growing up. He has to do everything himself. He has mastered the spelling of his last name!! He is so smart!!
I am supposed to go back to school tomorrow night, after a two-week break. I do not know if I am going to be able to go back. I need to work; we are having a hard time right now. Our van needs tires and we cannot afford them, we have been using the Neon to take Andrew to the doctor. It is a tough decision but it is one that I have to make for my family.
As always Thanks for stopping by and checking in on Andrew and our family. Your love and support means so much. There are days that I feel I cannot go on and then I read the love and support in the guestbook.
Friday, July 1, 2005 8:23 AM CDT
Thanks to everyone for your prayers!
We had to take Andrew to the hospital yesterday on an emergency basis. They got us in at 1:pm. We feel we got many issues to deal with right now. They feel that his waking and choking in his sleep is from where he is aspirating. He is also having reflux and secretion issues. He is still scheduled for his Video Swallowing Study on July 7th at 10:00 am. A video swallow study uses X-rays to take pictures of Andrew’s throat while he is eating and drinking. It lets the doctor and therapist take a careful look at how Andrew swallows. He was diagnosed last year with delayed swallowing. They will evaluate his need for a g-tube. A gastrostomy tube or g-tube is used to vent your child's stomach (for air or drainage) and/or give Andrew an alternate way for feeding. Right now, we are too modified Andrew’s diet to where we are giving him pureed food. They also are going to get his pulmonologist involved to check in his airway and lungs.
They are very concerned about Andrew’s leaning. Andrew is going to have another MRI to look at his brain.
We are going to be very busy with Andrew's appointments.
Please continue to pray for our family, we need the love, strenth, and courage right now.
Love Colin, Paulina, Andrew and Alex.
Sunday, June 26 , 2005 4:06 EST
****QUICK UPDATE**** THURSDAY JUNE 30TH!!
The past three nights have been really rough, Andrew has been waking up choking. We are taking him to the hospital today. Last night has been the worst, he choked for 20 min., and he never turned blue so he was getting some air. He sounded really gurgley (sp?) They mention reflux and larynx spasms. He is leaning really badly. His swallowing study is still scheduled for next Thursday at 10:00am. We see the feeding team on the following Tuesday. Please pray for Andrew. Please God give us some answers!! Will update everyone as soon as I can.
We took Andrew to the surgeon on Friday, she feels that he does not have a hernia. Which is very good news, but now we are back to square one about what is going on with him. She said he does have a small lump at his navel. It could possibly be a cyst. We will be going to the feeding team and G. I. doctor on July 12th. I hope we are able to get some answers with what is going on with him.
Andrew is still having all kinds of problems. He is not sleeping. Colin and I take turns sleeping with him so one of us can be rested. He has been throwing up at least a couple times a week. When he has bowel movements, he has been making noises while he is passing them. They have been soft. We are still waiting for them to schedule his a video swallowing study. He has lost a lot of muscle mass. He does not want to walk most of the time. He wants daddy to carry him or be in his chair. When he standsand sits, he leans to the right. When we went to pediatric rehab, they told us that they did not want to do anything at this point. They wanted to wait until his hands are locked that we cannot straighten them out. They do not want to brace his feet. His right foot is curved really badly. When he walks, his knees are touching.
His heart rate has been running high again it has been around 120. He gets extremely cold; his body temperature at times is 90!!
Please pray that God will lead us in the right direction. Please pray for the many MPS children that are enduring so much.
Thanks for visiting, please sign Andrew’s guest book to let us know you were here.
Love
Paulina, Colin, Andrew and Alex
Thursday, May 26, 2005 8:40 AM CDT
Hello everyone!! Thanks for stopping by and checking on Andrew and Alex!
Andrew is still very inactive, we took him to the Zoo, and he rode in his chair the whole time. You could just tell he just was not there. He does not like to go places anymore. He is more comfortable at home.
He is going to have a Video Swallowing Study; they think he is having reflux. He also went to Pediatric Rehab and they are recommending lateral support for his wheel chair he is leaning to the right. They also ordered an evaluation of our bathroom to modify it for him. He is getting so big, it is hard to pick him up and put him in the bathtub. His right side of his body is getting more contractures than the left. There is not much we can do to prevent this; we exercise him as much as possible. He is having a hard time sleeping again. Bowel movements are coming about every three days and urine output is about the same.
Alex is doing wonderful. He had a blast at the Zoo. Of course, he cannot wait to go back.
Have a safe weekend!! Keep the MPS children in your prayers!!
Wednesday, May 11, 2005 8:26 AM CDT
i HAVE ADDED NEW PICTURES TO THE PHOTO ALBUM!! CHECK THEM OUT!
Sorry I have not updated in a couple of weeks. Life is always full at the Jump house!
Andrew seems to be slowing down more and more. He does not run anymore, when he does he falls. He just pretty much sits on the couch. It is so different not running to make sure he does not get hurt. We got his ramp put in; all he wants to do is go up and down the ramp, which is good for his legs. A volunteer through Hospice came and put it in for us. I do not know what we would do without these wonderful people. He is still having problems with his intake and output.
We went to my sister’s for a cook out for Mother’s day. We had a good time. Mother’s day is very hard for me. I think of the twins and wonder what they would be like. Than I think of Andrew, it is too much to bear. Alex put a smile on my face; he brought me a card and said, “We do not have nay money so here! He is such a beautiful child. Thank you Lord for giving him to me!
We stopped at a good friend house; I have not seen her in about 6 months. She has a little boy that is the same age as Andrew. I was not prepared for what emotions that overcame me when I saw him. I found myself wondering about what Andrew’s life would have been like if he did not have this horrible disease. Then I thought how unfair life could be. I hate MPS and what is does to our children.
Thanks to everyone for your prayers, they mean so much to us.
Tuesday, April 26, 2005 8:04 AM CDT
Hello everyone!
First, I want to say Thank you to everyone who is praying for Andrew and my family. It means so much to us.
We went to see Andrew’s Metabolic Specialist at Children’s on Friday. He is possibly retaining fluid in his abdomen. They ran some more blood work; his results are still running high normal. If he is having congestive heart failure, it is in the very early stage. At this point, there is no form of treatment. It is also possible that he is having trouble with his pituitary gland; if this is the problem, there is nothing that they can do.
He is going to see Rehabilitative Medicine on May 18. With his increased muscle weakness, they will help us adapt our home for caring for him.
Andrew went outside yesterday and fell ten times. We are waiting to get out ramp in, so it will be easier for him. He just cannot do stairs anymore. He wants daddy to carry him while he is outside, all 74 pounds of him.
He still is eating good, the fluid intake and output is still a problem. He had a hard time sleeping last night; I think his stomach is bothering him.
After a lot of soul searching, we decided to take him out of the homebound program at school. Most of the time he does not even realize that Joann; his teacher is here. She still comes and visits him. She is a wonderful person and friend.
Alex met a friend this week. Her name is Sissy, her mother brought her over to play with Alex. He had a blast. They will go to pre-school together. Alex will start pre-school in August; the bus will pick him up in front of my house. I think school will help him a lot. He will have his own special place to do special things.
Thanks everyone so much for coming to visit Andrew. Let us know you have stopped in by signing his guest book.
Our MPS babies are always fighting some sort of battles; please remember all of them in your prayers.
Saturday, April 16, 2005 8:20 AM CDT
Hello everyone, sorry it took me a little while to update!!
First, I want to say Thank you to everyone who is praying for Andrew and my family. It means so much to us.
Andrew’s Echo with Sedation went well. He had no problems, Thank you Lord. They let Colin stay with him. The only time they asked him to leave was when they did the Echo for about 20 minutes. Alex was upset to leave his brother; he was so worried about him. He cried for about 10 minutes. I kept telling him that Andrew was going to be ok and they just wanted to take a picture of his heart. His heart rate was normal throughout the test. We found out Wednesday that his heart was normal. His kidney and liver function is also normal. Therefore, we are back to square one of not knowing what is going on with him. They are saying it is brain related. We go next Friday to the Metabolic Specialist at Children’s.
Andrew has been loving it that he can get outside. He is not as active as he used to be and falls a lot more but he still loves being out side. We are waiting to get out ramp in, so it will be easier for him. He just cannot do stairs anymore. He wants daddy to carry him while he is outside, all 71 pounds of him.
He still is eating good, the fluid intake and output is still a problem. He is sleeping about 10-14 hours!! Can you believe that!! I really do not think it is the sleep medicine, because he just started sleeping this long in the last couple of weeks.
After a lot of soul searching, we decided to take him out of the homebound program at school. Most of the time he does not even realize that Joann; his teacher is here. She still comes and visits him. She is a wonderful person and friend.
Well I believe we have the Medicaid issue worked out. The Cabinet for Families and Children told us not to worry that Andrew would always be covered. Therefore, that is a big relief. I want to say thanks to Andrew social worker for taking the time out of her schedule to go and work this out for me. It is very hard for me to do things like this because we have no one to watch Andrew and Alex. Still have not heard from Social Security, maybe no news is good news.
Alex is having some behavior issues. He has a lot of emotions he does not know how to deal with. He seems to act up when we are working with Andrew. I know our life is very hard on him. He does not get to so much. We are to start him in pre-school in August. We are trying to work out an issue with the bus. I think school will help him a lot. He will have his own special place to do special things.
Colin has an interview Monday with the local electric company to become a meter reader. He is doing pretty well. I have been very busy with school. I have made the President’s List again. I have been sick some this year, I think it has to do with stress and sleep issue.
Thanks everyone so much for coming to visit Andrew. Let us know you have stopped in by signing his guest book.
We got to meet Tyler who has MPS I and his mommy and daddy; he just turned one in January. He is getting ready to undergo a Bone Marrow Transplant, please keep him in your prayers.
Our MPS babies are always fighting some sort of battles; please remember all of them in your prayers.
Tuesday, April 5, 2005 1:01 PM CDT
Quick update April 11, 2005
We sat at Children's Hospital for 2 hours before they sent us home. We were never put on the sedation schedule, just the echo and EKG. They cannot get a good reading without hte sedation on Andrew. We have to go back Monday at 9:30am.
I lift these hands, dear God, to You,
in praise and thanks for all you do.
You light the path through all my days
and bless me with your loving ways...
I lift these hands dear God, to You,
in troubled hours when joys are few.
You bear me up on eagles'wings and see
me through each test life brings.
I lift these hands, dear God, to You,
please grant me wisdom, patience, too.
Then fill my heart with love and caring,
precious gifts you've made for sharing.
poet - emily matthews
Ok where do I start!! Please pray for my baby!! He needs prayers right now. His heart rate has not dropped below 100 even when he is asleep for almost two weeks. We are getting very concerned over this. He is going to have an echo with sedation, Friday at 9am. He also has decreased urine output. They checked his kidney function and liver function the test came back normal. They are also checking him for congestive heart failure. He is not sleeping, we gave him a double dose of his sleep meds last night, and he did not sleep at all. We just do not know what to do. His face and feet are swelling. Last night he looked blue. He is falling so much more. He just sits and stares off into space. That is not like Andrew, he is not his usual hyperactive self. I am so worried. Sunday night he got choked on his own salvia. He has delayed swallowing.
Last month we received a letter for SSI that Andrew had been overpaid a little over $2800.00 we still have not heard back from them about if we have to pay them back or not. They have suspended his SSI check and he will lose his Medicaid. I do not have time or the strength to fight another battle. His social worker is trying to help me deal with this problem.
Will update everyone when I can!!
Thanks so much!! Let us know you were here by signing the guestbook.
Paulina
Wednesday, March 23, 2005 5:29 AM CST
SPRING IS HERE!!!
I filed a waiver with Social Security have not heard anything yet. Hope that means good news.
Andrew has been sleeping pretty well. You know that since I am talking about it, it probably will not last long. LOL!! Andrew is still having a hard time walking. They are still saying it is probably due to the progression of Sanfilippo. He also is having trouble when he is trying to get up off the floor. He will crawl to a place (couch, door, wall, or table) to pull himself up on. This is breaking my heart, to see my seven year old to be doing what he did when he was seven months. : (
Alex is awaiting the Easter bunny!! He asked if he was going to come and see him. He is very happy that he can get outside!!
Colin changed jobs, but it did not work out, they did not offer insurance so he back to his old job. We have to keep Andrew covered, no one else will cover him. As I said before, Kentucky does not offer much support in helping the disabled.
Please continue to pray for the MPS children and their families, our life is a constant struggle just for the simple things in life; doctors who are not afraid to treat our children, families waiting for diagnosis, insurance, SSI, school issues, ERT, and the everyday problems our children face.
Ty, Seth, Jon, Andrew C., Sam, Tyler, Andrew J., Lindsey, Jesse, Hannahka, Ben, Kraig, and many more that need your thoughts and prayers.
HAPPY EASTER EVERYONE!!!! GOD BLESS
Paulina
Tuesday, March 8, 2005 7:44 AM CST
Well it has been a typical couple of weeks at the Jump household, never knowing what to expect. We cannot wait until the weather stays warm. Andrew and Alex love to be outside. Andrew seems to be slowing down more and more. When he is outside the running that we could never keep up with seems to be slowing down. We can actually sit down in the chairs while we are out.
I got a letter Saturday from Social Security stating that they have over paid Andrew almost $3000.00. I really do not understand how this could happen. I submit our check stubs every month. Therefore, it seems that someone has not been doing his or her job. I called Monday; we are going to try to appeal. I filed a complaint against the office here in Kentucky. The little money he gets from SSI makes a difference, but the Medicaid is really, what we need. They base all this on our income, it would seem that they would have a program for children that have extensive health care needs that would not be based on our income. Some states have programs like this. I guess we should look into a state that is special needs friendly.
We have been on a roller coaster ride with Andrew in the last couple of weeks. He has not been sleeping again, so we have decided to try a new sleep medicine. We are trying Amitriptyline, he is sleeping a little better however he still has a hard time. One of our problems with sleep medicine is that it takes away his personally. We do not hear laugher or sounds, so far this medicine we still have the laugher and sounds. : )
A week ago this past Sunday, we had to take Andrew to the ER. He would walk and then fall down. They wanted to make sure nothing was broken so they x-rayed him from the hips down. Nothing was broken or out of place, so they said it was probably due to the progression of Sanfilippo. We are also exploring the possibility of tight heel cords. His walking is a little better, but he is having problems falling. He also is having trouble when he is trying to get up off the floor. He will crawl to a place (couch, door, wall, or table) to pull himself up on. This is breaking my heart, to see my seven year old to be doing what he did when he was seven months. : ( Another thing we have noticed is that he is choking more.
He is due for several check-up at Cincinnati Children’s over the next several months. We have found out that his genetic counselor; Michelle, who he has been seeing and helping my family over the last 2 ½ years is leaving. We will miss her immensely. She is a wonderful and caring person. We want to wish her luck in all the endeavors that she encounters in her life.
Alex has been doing great. He is such a trooper. We can already see how sensitive he is going to be. He has met Joann and Gail’s new baby. He was so curious and caring. He just could not understand why they had to take the baby home. He wanted him to stay with us. He has wisdom beyond his years.
I am still in school; I only have 10 months left. I am already looking for a job with a lawyer. Colin is changing jobs, he is going to work 3rd shift to free up the day for me to work as a paralegal. Andrew is on homebound and we do not use a sitter so one of us is with the children at all times. Please pray all the decisions we are making will work out.
Thanks to everyone for thinking and praying for all the MPS children and their families on February 25th. I spent the day educating the customers that came into Bob Evans in Florence. It was a very emotional day.
Please continue to pray for the MPS children and their families, our life is a constant struggle just for the simple things in life; doctors who are not afraid to treat our children, families waiting for diagnosis, insurance, SSI, school issues, ERT, and the everyday problems our children face.
Ty, Seth, Jon, Andrew C., Sam, Tyler, Andrew J., Lindsey, Jesse, Hannahka, Ben, Kraig, and many more that need your thoughts and prayers.
Friday, February 25, 2005 4:47 AM CST
TODAY IS NATIONAL MPS DAY, PLEASE REMEMBER THESE SPECIAL CHILREN AND THE BATTLES THEY FACE!!!
Thanks to everyone for your continued prayers. Andrew has been on the go go go!!! We took him back to the doctor last week because he had not slept for 5 days. It breaks my heart to put him back on sleep meds, he does not laugh or show any kind of happiness sleep meds. However, he does need to sleep for his own quality of life. He is sleeping a little better with the meds, they say his brain is not telling him to sleep. Last night he had a rough night he just could not relax. We have seen this many times before they have no answers to what is really going on with him. Andrew is starting to have a hard time going down the steps to the backyard. So a fund has been started so we can build a ramp for him. We also are thinking of modifying the bathroom.
Last Friday, Alex enjoyed a night out with his dad! He needs to be able to get out and do the normal things like eating in McDonalds. So Colin took him to eat at McDonalds and they enjoyed a couple hours out together. Otherwise, Alex has been great, he goes with the flow. He has a has a Expression Therapist that is working with him on his emotions.
I made the President List at school again!! I still have a 4.0, Thank you Lord for all that you do!!
There are many of our Children in need prayers; Ciara, Seth, Ty, Tyler, Andrew C., Will, Kraig, Ben, and many more!!
Saturday, February 12, 2005 7:48 AM CST
Andrew, Alex, and Colin, Thank you so much for being my Valentines. Without you guys, my world would be empty.
HAPPY VALENTINES DAY MY DARLINGS!! Love you Mommy!!
I do not want to say this to loud but everything is working at my house, besides me!! LOL!! It seems I am developing a chest cold. Hope the rest of the family does not get it. :(
Andrew has been extremely hyperactive again! He has not been sleeping well. His heart rate has been up in the hundreds. We are keeping a close eye on his heart. He just went to his heart doctor in December and everything sounded ok. We have never had an echo done; maybe we need to do one. He is still eating good. He got to see his cousins last week, he had not seen them for awhile!! He was very excited to see them. Please keep him in your prayers.
Alex is doing great! He is such a trooper, he has been walking around all week with the stephoscope (sp?) around his neck saying, he is going to be a doctor!! He probally will with all the issues he has to deal with. He has a has a Expression Therapist that is working with him on his emotions. He has not done well since Andrew went to the hospital, he does not want Andrew to leave the house. I think he is afraid that Andrew will have to stay in the hospital again.
There are many of our Children in need prayers; Ciara, Seth, Ty, Tyler, Andrew C., Will, Kraig, Ben, and many more!!
Thanks to everyone for stopping by, please remember to sign Andrew's guestbook. We love to read who has been here!! Thiniking and praying for you all!!! God bless!!
Paulina
Thursday, February 3, 2005 8:41 AM CST
Hello Everyone!!! I look out this morning and frown : ( I cannot wait till SPRING!! I really do not care for this time of the year! No sun, I want to see the sun and flowers and hear the birds singing. I have not wanted to leave the house. I have no desire to get out and do anything.
Andrew has been doing pretty well. Last night we had a rough night, he was so restless. His heart rate has been running in the low hundreds; about 104. He tried to throw up last night but could not bring it up. Hope he is not getting sick again. We had to get rid of the cat; Andrew started breaking out from it! He has such sensitive skin. His teacher called last night and told us she was sick either with a cold or with the flu! Great!!!!
Alex is doing great!! He is a little disappointed about the cat having to leave. We are going to try to take him somewhere special this weekend!
We are slowing getting things fixed at my house. The oven part will be here in the next couple of days. Hope it is easy to install! LOL!!!
Thanks to everyone for stopping by and praying!!!
Sunday, January 23, 2005 3:03 PM CST
This has been interesting week. So much added stress. Lets see where to start.
Colin went to the ER on Monday, he was having severe pains in his head. Thanks God it only turned out to be tension and stress. I am trying to convince him go to our family doctor to see if they can help.
On Tuesday,I came home from school and thought it was alittle chilly in our house. Thought maybe Colin had turned the heat down, went to bed and woke up about 1:00am really cold. The furance was not working. This is the fourth winter that it has stopped. Our house is only four years old. Well I called around and everyone wanted $100 just to come out to look at it. So I decided to fix it myself. Good thing it was not to hard, turned out to be the thermostat. I match the color wires and it worked. I will have to add that to my resume. Our oven also decide to go out. As soon as we get that part we will atempt to put it in.
Andrew has been doing great. His sleeping has been good, but have I bragged too much! The last couple of nights have been up and down. He developed some diarrhea. Will be watching this to see what developes. He is eating really well still. He has been getting choked alittle more on liquids and solids. He has been sitting on the couch more instead of standing or running.
Alex is doing great also. He keeps us on our toes. He is so smart! He has discovered the clock has numbers so he wants to count them all the time.
Please pray for all the MPS families. Thanks for stopping by, lets us know you do by signing Andrew's guestbook.
Thursday, January 13, 2005 6:32 AM CST
Hello everyone!
Sorry I have not updated in a while. Life has been busy at the Jump household.
Andrew was up last night throwing up again. He seems not to feel bad, he is still laughing and drinking. He has no fever. His nurse is going to check in on him today. It has been amazing since we took him off his sleep meds, he is sleeping better. He is much calmer these days, just sits on the couch and watches his videos. His stomach seems to be sticking out more than normal. I do not know if this means that his organs are getting bigger. With MPS, the storage material stores everywhere and makes him organs enlarged. He has to go outside some this week and run. Well he ran very little, just stood and smiled most of the time.
My mom and dad were happy to see him this week. He was just as happy to see them. My mother has always been his favorite.
Alex is doing great. He just tries to cope with what life has for us. The other night Andrew and Alex was sitting in the bathtub together; when Alex looked at a smiling Andrew and said, "Andrew has teeth like Sponge Bob!" Colin and I rolled in laughter. Andrew just now has his top two permanent teeth so he has two big huge teeth that are all you can see when he smiles. Children say some of the funniest things.
I am back in school. I am taking Civil Procedures. I only have a year left. It is getting very tough to stay focus. The money in our household is tight. I work as a server so this time a year tips that I receive goes way down. Please pray that I can hang in for another year and not have to drop out.
Please remember to pray for our MPS families, they endure so much. Please say an extra prayer for the families that have lost their battle with MPS, this time of year when the mood is somber it gets very difficult to carryon.
Let us know you stopped in by signing Andrew guest book.
Thinking and praying for each and everyone!
Love
Paulina
Thursday, January 6, 2005 8:05 PM CST
I am happy to report Andrew is doing great! He is eating and drinking. We did make a change in his medicines we took him off the Trazadone. He has been off it since we were in the hospital and he has not been this happy in a long time. He is just Mr. Smiley right now. He is interacting with us so much more. He has used a few words "monkey" and "Hi." He has been hoping and jumping around. He still is sleeping well.
Alex is doing great. He has to deal with so much. He has a new friend. He has a cat now, his name is Jasper! Alex is having a blast with Jasper. He talks to him, chases him, and loves him. Andrew just will look at the cat; he does not try to pat him. Alex got up the other day, mind you, he is only three, and he asked if I was ever going to take him to school. I was speechless. LOL
On New Years eve, we spent the evening with my mom and dad. They are always delighted to spend time with the boys. Andrew fell asleep on her couch by 7:00, so Alex was the entertainment for the night.
I start back to school on Monday; it has been nice to be out for a while. Only 5 more law classes and 6 regular classes and I will be done.
Please pray for our MPS/ML families, everyday each and everyone have to endure so much. There are also so many families that are looking for a diagnosis, getting a diagnosis is extremely hard but not knowing is heartbreaking.
Please sign our Journal to let us know you stopped by.
God Bless;
Paulina
Wednesday, December 29, 2004 10:08 AM CST
We spent most of Christmas in the hospital with Andrew. He got dehydrated from this virus that he cannot kick. He was there for a couple of days. He seems to be feeling a little better. He is drinking and eating a little. But he still is just wiped out. Something like this make us realize that anything can take him anytime. Please pray that he continues to improve.
We are having a very emotional week. The depression of knowing that we are probally going to buried our third child is too much to bear sometimes. It is so easy to get caught up in the fact that we can keep Andrew how he is forever, but we know that is not the case. The reality washes over you when you hear the news of another MPS child that has gained their wings. One of our MPS children from Canada, Emma would of been 3 in a couple of weeks has gained her wings. Please pray for strength for her family.
We also have gotten word that another MPS child, Lindsey is being sent home from North Carolina, she is fighting for her life.Please pray for strength for this family also.
There are several families that their children are getting ready to endure tests and surgery please keep them in your thoughts and prayers: Ty and Kraig. As always please pray for all our families. Thanks Pauina
Wednesday, December 22, 2004 5:03 AM CST
Our trip to the MPS Conference was cut short. Andrew got sick. We did get to enjoy two days of meeting wonderful families. It was so great to meet the families that I chat with on the forum. I wanted to bring the children home with us. On Thursday we had breakout session on each specific MPS disorder. It was very informative. It was quite amazing being in a room with so many Sanfilippo parents. On Friday we went to Animial Kingdom with Patty, Jack, and Jesse (MPS III A) from Marland. We had a great time. I wish they lived closer so we could spend more time together.
Friday night is when Andrew started getting sick, he was up most of the night. We decided it would be best to bring him back home and away from the other children. So we began our long journey home.
The drive took us about fourteen hours! Andrew did pretty well. On the way home of course he was sick, so it was a little different story.
We took Andrew to his doctor Monday, he said the virus needs to run it course that there was nothing they can give him. Right now he is really stuffed up. We are giving him Zrytec. His sleeping is still not great. We are going to increase his sleep meds as soon as he is feeling better.
On Tuesday, Andrew and Alex got a special visit from Santa!!! I would like to say Thank you to this special Santa. There are so many wonderful people in this world that go unnoticed.
I want to wish everyone a Happy and Safe Holiday season. May God Bless You!!!!
Saturday, December 11, 2004 11:26 AM CST
This week has brought many tears and smiles. It has been a very emotional week for us. On Tuesday, our twin son’s Christian and Cody would have been fourteen. I still cannot believe that it has been that long; it seems like just yesterday.
Andrew continues to be doing great!!!!! His laughter is so contagious. It is so wonderful to see him happy again. The power of prayer is truly wonderful. Thanks to you all.
We decided to take the boys out last night to see all the Christmas decorations and do a little shopping for our trip. Andrew went hopping and laughing through the stores to the Christmas music. What a wonderful site. He has lost his understanding of Christmas, which really breaks my heart. However, the little gifts he has given us over the last couple of weeks bring back the joy of Christmas to our hearts. Of course, Alex is going through telling us he wants everything. Andrew is content to just watching him.
Usually by now, we have picked up the Christmas tree at least twice or have gone through the house finding all the ornaments where Andrew has taken them off. This year he has shown no interest in the tree. Which is a blessing in a sense, but now we miss him doing those little things. We are having my family here for Christmas that will make Andrew very happy. He is so much more comfortable in his own home.
In five days, we will be leaving on our trip to Florida for the MPS Conference. We want to say Thanks to John Pierce and Hospice of Northern Kentucky for making this trip possible. If it was not for these wonderful people, we would not be able to attend. We are going to meet so many families that live with MPS and the daily struggles that our children face. We are driving down so please pray for a safe journey for us.
Saturday, December 4, 2004 7:07 EST
Good Morning Everyone!!!
Well Andrew continues to be doing great. This week we have heard his laughter again. He also has blessed us with his voice this week. He has used the words: "cow", "ig" (pig), "duck" and "Hi." He went to see my mom and dad and tried to say "papa." It brougt tears to everyones eyes. He has been making his happy sounds and rasberries. All this is music to our ear and heart. I came in from work last night to him greeting me at the door saying "Hi!" He is interacting with us. His sleeping has been great. What a wonderful blessing. Thanks everyone for your prayers!!!
After much thought and soul searching we have decided to postpone his LP until after the holidays. He is doing so great and not showing any pain. We do not want to overturn the applecart so to speak.
We can hardly wait for the MPS Conference which is being held in Florida. We will be leaving in about ten days. We get passes to Disney, get to meet some of the wonderful families that I have grown to love over the internet. The conference will have some of the leading doctors in the MPS field, so we can learn about some the treatments and research. We are just so excited to be with families that have similar experiences as we do. We are driving down so please pray for a safe journey for us.
Tuesday, November 30, 2004 4:26 PM EST
Well the bumpy road of MPS has taken another turn. Andrew has done better the last two day. More relaxed and calmer. His sleeping has been better. What gives? Nothing has changed in his meds. Maybe our sweet MPS angels are looking after him ! :)
We got the call today, they are wanting to do his LP next Tuesday, December 7 at 2:00 pm. This is a very special day, our twin boys would of been fourteen on this day. A new nurse called me of course she told me that he would not be put under to do this. I just laugh and told her I would call back when the head nurse was there.
We can hardly wait for the MPS Conference which is being held in Florida. We get passes to Disney, get to meet some of the wonderful families that I have grown to love over the internet. The conference will have some of the leading doctors in the MPS field, so we can learn about some the treatments and research. We are just so excited to be with families that have similar experiences as we do. We are driving down so please pray for a safe journey for us.
Well I started my new class this week Legal Research and Writing. They should be handing out the President's List soon, guess who is on it again.
I want to say Thank you to everyone that has visit Andrew's new site. I love it!!! Jess you are right, this is something that I will cherish forever.
Please be sure to sign his guest book!!
Saturday, November 27, 2004 5:29 AM CST
Andrew is very miserable. Still have not hear back from his doctor about doing th LP. Of course with Thanksgiving I'm sure it will be next week before we hear anything.
We went to my sister's house for Thanksgiving he had a very hard time. We left early because he started to cry. He is still not wanting to ride in the van. Even for the shortest trip he claws at the windows trying to get out.
We are susposed to be going to Disney in three weeks, I do not know if he is going to be able to make the trip. I can not imagine him riding for 15 hours like this.
He is still not sleeping very well.
Last night his teacher came over and spent some time with him. He loves her so much.
Please remember to sign his guestbook. We look forward to reading it.
Wednesday, November 24, 2004 9:49am
ANDREW WEARS DIAPERS AND HAS LOST HIS SPEECH AND IS SLOWLY LOSING TOUCH WITH THE WORLD AROUND HIM. ANDREW HAS SUFFERED MILD TO MODERATE BRAIN CELL LOSS. HE HAS 12 SPECIALISTS THAT SEE HIIM REQULARLY. HE USED TO HAVE 6 THERAPIST THAT HELP HIM EAT, COMMUNICATE, AND KEEP HIM MOVING AS LONG AS POSSIBLE, HE WAS DISCHARGED IN JANUARY. THEY SAID THAT WAS NOTHING MORE THEY CAN DO FOR HIM.
HOSPICE HAS STARTED TO CARE FOR HIM IN OUR HOME. IT IS A WONDERFUL ORGANIZATION THAT HERE IN KENTUCKY LIKES TO GET INVOLVED WITH CHILDRENS CARE AS SOON AS THEY ARE GIVEN A LIFE-THREATING DIAGNOSIS.
ANDREW DOESN'T PLAY WITH TOYS ANYMORE, HE FINDS JOY WITH BARNEY & LITTLE BEAR VIDEO'S. HE LOVES TO RUN, BUT FALLS ALOT AND WANTS TO BE CARRIED. HE WEIGHS 64PDS. HE HAS LOST 6 PDS IN THE LAST MONTH. HE IS MEDICATED FOR SLEEP AND SEIZURES. HIS SWALLOWING IS DELAYED. WHICH MEANS HE IS NOT SWALLOWING AFTER HE CHEWS, HE HOLD IN HIS THROAT AND THEN SWALLOWS.
HE IS HAVING SOME PROBLEMS WHICH WE ARE TRYING TO FIND THE SOURCE. HE SEEMS TO BE IN PAIN. HE HAS HAD AN MRI AND CT TRYING TO FIND OUT IF HE HAS HIGH PRESSURE. HE IS WAITING TO GET A LUMBAR PUNCTURE DONE, THIS IS TO MEASURE THE INTERCRANIAL PRESSURE. IT IS BREAKING MY HEART TO SEE HIM SUFFER AND NOT BEING ABLE TO TELL US WHERE THE PAIN IS OR HELP HIM.
HIS LUNGS ARE CLEAR. HIS HEART IS GREAT. IF WE COULD ONLY STOP THE DAMAGE IN HIS BRAIN.
ANDREW HAS A 3YEAR OLD BROTHER,ALEX THAT DOESN'T HAVE THIS DISEASE. HE HAS HAD TO GROW UP FAST. LIFE GETS TOUGH HAVING A 7 YEAR OLD THAT IS TOTALY DEPENDED ON YOU AND A 3 YEAR OLD. LIFE IS GOING TO BE HARD ON ALEX THERE IS MUCH THAT HE IS GOING TO HAVE TO UNDERSTAND AT A VERY YOUNG AGE.
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