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Friday, May 13, 2011 9:05 AM CDT Always Have Hope
When you struggle for answers, and are trying to cope
BELIEVE in your heart; ALWAYS have hope
Hope takes you farther, is ready to go
Hope holds the vision when others say no
Hope is the river, strong full and deep
Hope knows no limits, no mountain to steep
Hope for a treatment, Hope for a cure
BELIEVE in a miracle, holy and pure
Hope hangs on, believes in the best
Hope is a journey, each minute a test
When your spirit is weakened and your trying to cope
BELIEVE in your heart; ALWAYS HAVE HOPE.
Thursday, May 12, 2011 11:17 PM CDT May 15th, 2011
National MPS/ML Awareness Day!!!
It is time to get out your purple ribbons! May 15th is National MPS/ML Awareness Day and we are celebrating!
Please wear your Purple!
I am the very proud mother of two beautiful daughters! Ashley is a Sophomore at CHS and I am so proud of the wonderful young woman she is becoming. Allison is in Fourth grade this year at Robert Miller Elementary, and she amazes me every day with her courage and her spirit! Allison was diagnosed with a rare genetic disorder,
Mucopolysaccharidosis or MPS type 1, just before her second birthday.
MPS disorders are genetic disorders that limit the body's ability to produce certain enzymes needed for metabolizing complex sugar molecules. These diseases are progressive and cause cellular damage which severely diminishes quality of life and dramatically shortens the lifespan of those affected.
So tomorrow and through the weekend, my family and I will be wearing purple as a sign of strength, courage and hope for all the kids of the past, present and future who will battle these terrible conditions. Allison will be wearing purple tomorrow and passing out purple suckers and ribbon tattoos to her classmates. This will give her a chance to tell her peers about her life and how MPS affects her.
I will be bringing purple ribbons to the office at Robert Miller for those of you who would like to join us in celebrating National MPS Awareness Day. Please wear purple and/or your purple ribbon proudly in honor of the COURAGE children with MPS disorders, like Allison, show.
If anyone else would like a purple ribbon (in the Bismarck area) please send me an email and I will try to get one to you!
ND residents will be proud to hear that both of our ND
U.S. Senators, Senator Hoeven and Senator Conrad, have agreed to co-sponsor a resolution to have
May 15th,2011 Declared National MPS Awareness Day by our United States Congress! We are even Raising awareness in our federal government!
Ashley and Allison are teaching us what it is to raise awareness, they have a video that has been uploaded to You Tube, check it out! ¡§MPS Awareness Video Take 2¡¨
http://youtu.be/rgtW86HtEOo
Please, Celebrate National MPS Awareness Day with us!
Show your support by wearing purple, and sharing about an affected child that you know.
For the families of those who are newly diagnosed, you are not alone in this journey.
Please feel free to share this email. ļ
For more information on MPS disorders, Please visit:
www.mpssociety.org
To visit Allison's website, go to:
www.caringbridge.org/nd/allison
Please sign the guestbook and let Allison know that you took the time to visit, she loves to get new messages!
One last request: Please forward this email on... to everyone and anyone. There are more children out there with a similar diagnosis, and unfortunately there are more to come. One of our family's biggest challenges has been having to explain over and over again what MPS is and what it does. If we can make people aware of rare disorders like MPS, it will make a difference.
I believe that the more aware people are of rare disorders, the less rare they become.
Thank you,
Jennifer Restemayer
Monday, February 14, 2011 7:48 PM CST OK... We went to U of M for Allison to get new ear tubes... she really really needed them! Only the procedure did not go as planned (not much does with our kiddos) We went in to post op to see her, and Dr Rimmel came in and told us that she gave him a big surprise. From what I understand, when he made the incision to place the ear tube, there was a mass behind her ear drum. He tried to pull it out, and the mass must have been either attached to or wrapped around her jugular vien. The vien ripped or was punctured and she started to hemorage. Dr Rimmel said it was ALOT of blood pouring out, but luckily he got the bleeding stopped quickly. (Not enough for her to need to get any blood thank goodness!) anyway.. we were taken from post op to CT scan to attemp to find out what the mass was. of Course, there was not a radiologist left in the building as by that time it was after 6pm on Friday night. The ear tube on the right side was not placed.... We were admitted and spent the night in the hosp. Allison was fine except for some nausea and general discomfort. We were told that the material used to pack Allison's ear is dissolvable and will not require anything to remove it, so that is good, but there was still no news on the mass. We were discharged on Sat morning and tried to go about our fun weekend plans. Alli was a bit tired, and did not eat without having to vomit after until last night...
So today the good news is that the mass is not a tumor! however, it is a foriegn object. Most likely an old PEtube that never made its way out of her ear canal completely. This will require surgery to remove. She will have to be intubated and Dr Rimmel will go in through the back of the ear and remove the foreign object. Intubation is VERY difficult for Allison and it is very risky because of her airway issues.
I was really hoping that ear tubes were going to be easy!
I hope this makes sense, I am still too tired to think! :)
Tuesday, January 18, 2011 7:57 PM CST Help us Celebrate Allison’s 10th Birthday!
Join team “Alli ROCKS” for the
Walk for wishes to benefit the ND Make a Wish Foundation!!
Bismarck - Century High School Date: February 05, 2011 Time: 9 a.m.
Walk for Wishes is an indoor 5K that provides the opportunity for family, friends and individuals to join together in a fun-filled morning of exercise and camaraderie. The event allows participants to raise money and make a difference in the life of a child. Walk for Wishes is a free event to participate in. Walkers are encouraged to collect pledges from family, friends and co-workers to benefit children with life-threatening medical conditions. Participants with a minimum pledge total of $25 will receive a T-shirt and are eligible for additional prizes. Walk for Wishes will be held in:
Bismarck - Century High School; Fargo - Scheels Arena; Grand Forks - Grand Cities Mall; Minot - Magic City Campus; Williston - Eagle Ridge Wellness Center
Check in will start at 9 a.m. and the Walk will begin at 10 a.m.If you have any question, please feel free to contact us at 701-280-9474 or daltendorf@northdakota.wish.org
If you would like to register via the website, go to: http://northdakota.wish.org/2010/12/21/walk-for-wishes-2011/
Saturday Feb 5th 2011 is going to be a day of celebration for our family! It is Allison's 10th Birthday! We would like to invite you to celebrate with us by attending the Walk for Wishes to benefit the ND Make a Wish Foundation!!!
If you would like to be a part of our team "Alli ROCKS" please register online (there is a link above) and click "Join a Team" There will be a drop down box of teams that you may choose to join. Our team is called "Alli ROCKS" (Allison chose the team name LOL) .
Allison received her wish to meet Miley Cyrus in April of 2010. Please help us make other children’s wishes come true!
We hope to see you there,
The Restemayer Family!
Saturday, January 15, 2011 9:45 AM CST Saturday Feb 5 2011 we will be at the "WALK FOR WISHES" to benefit the Make a Wish Foundation of ND! Join us walking for a great cause.
Many of you will remember that Allison received her wish to meet Miley Cyrus in April of 2010. All four of us were able to fly to LA and were treated to a whirlwind weekend of trips to the Disney store, to Universal Studios and to a wonderful outdoor concert to hear Jordan Pruitt, Mark Balas, and Miley Cyrus sing! Then to a wonderful dinner where we were able to meet the cast of Hannah Montana! Can you imagine how exciting this is to a 9 years old girl? We want to be part of making an amazing wish possible for another child! Will you help?
Feb 5th 2011 will also be Allison's 10th Birthday!!! This is a huge milestone for us! I need to make this day a celebration.
Allison would like to form a team to walk with us for the Make a Wish Walk for Wishes, we are in need of suggestion for a team name!! She would like for me to have some t-shirts made as well!
If you have any suggestion for a team name or t-shirt logo to help us celebrate Allison, her 10th birthday and the walk for wishes event... please share LOL! I plan on having purple ribbons and temporary tatoos with us, so MPS awareness will also be part of this big day!
Sunday, December 12, 2010 10:35 PM CST This has been a hard weekend emotionally for me. I am struggling.
Saturday, Miss Allison had practice for the Christmas program at church. She had a line, and was excited to be in the program again this year! We are so lucky that we have great people that think about Allison while pulling this program together. They are willing to help make it possible for Allison to go up with the kids and do whatever it is that she needs to do. We discussed the placement of the chair that Allison will need to have up there and how we would get her a microphone when it was her turn to speak. We worked out the logistics of how she would get up to the front of the church and who would take her there. As Allison practiced the Christmas program with her peers, I sat in the pews and watched. I thought about how lucky we are that Allison is able to participate, that she is healthy enough to participate, that she has the desire to participate, that she is here... I am so grateful! That is where my mind went to other places. I had a major moment or two of the "Why's" I sat there and was overwhelmed by the unfairness of it all. Why does she have to sit in a chair up on that stage when her peers are standing on the risers? How is it fair that she has so much pain that she cannot stand for a 30 minute program? Before I knew it, there were tears rolling down my face and I had to get up and leave the sanctuary before the sobs started. I pulled myself together and was able go back in and watch the rest of the practice, but I have been unable to shake the "why's" since.
After the Christmas program practice on Saturday, all 4 of us went out for lunch. At one point, Allison needed to get up and go to the bathroom. As Allison and I headed through the restaurant, there was a little boy who really really stared. On our way back to our table, this little boy felt the need to "show" his mother what he was staring at.. he kept saying "see mom" "SEE" and pointing at Allison. (his mom did NOTHING, and the little boy got LOUDER)
Unfortunately, things like this happen to varying degrees all the time. It seems that there are people surprised by Allison wherever we go. Usually, it is not as intense as this little boy was. Sometimes when this happens we ignore it and go about our business, sometimes if it is a child, we smile and say "hi". I try not to pay much attention, and I always hope that Allison does not notice much. I try to get her engaged in a conversation or to make her laugh.. anything to take her attention away from the stares.
Anyway.. We sat back down at our table, Allison pushed her plate away, and put her chin on the table, her eyes filled with tears. My heart broke. I asked her if she was OK, she said she did not like the restaurant we were at any more and was not hungry. I tried to get her to come and sit with me, I wanted to hug her. She did not want/need that at the time. SOO I asked Allison to tell her dad about the conversation we had in the bathroom. She started laughing immediately as she started to tell her dad and sister about how COLD it was in the bathroom and how the toilet seats were freezing! Not really appropriate table conversation, but it made her laugh and got her mind off of the incident with the little boy.
I wonder sometimes just how I should handle these situations. I hope that Allison knows how beautiful she is in my eyes and in the eyes of the other people that know and love her. I wonder how many of the stares she notices and what that does to her emotionally.
There is so much that I want to shelter her from, but I can't. We are so blessed that she is doing so well physically and cognitively, but because she is doing so well, she knows when people are staring and making rude comments about her. It hurts her, and that is the most helpless feeling as a parent. I can't take away that hurt, and I can't help her understand why people are the way they are because I don't understand it myself.
We have always believed that the more Allison is out in our community and taking part in activities and meeting people, the more people will come to know and love her. We want for her to have a strong sense of community, to be able to go somewhere and run into people that know her and stop to say "hi". I believe that we have done a good job in that, and that we have wonderful people in our community. There are days (just last week) that it will take us over 2 hours to grocery shop because Allison has to stop and talk to so many people that she knows while we are there. :)
I have tried to tell myself many times that all of the positive attention that Allison gets when we are out and about overrides the negative stares and comments, most of the time I try really hard to believe that it does. I guess that is harder to believe after I have seen the hurt on her face and the tears in her eyes.
My hope is that parents are teaching their children that ALL of us are different. Everyone has their "Stuff" that they deal with. I hope that we are all becoming more accepting of peoples differences, no matter what they may be, and focusing more on personality than on outward appearance.
Thursday, November 25, 2010 8:43 PM CST
Happy Thanksgiving! I am so thankful for all of you that read Allison's journal and keep her in your thoughts and prayers. I struggle often with how to express what I feel in words, so when I saw the words you will read below, I felt like this MPS mom expressed it So well...I borrowed her words and adapted them to fit my child. (Thank you Jennifer!)
There is a danger, you know, in getting to know our child. There is a danger in getting close to this girl.
You may have to come to understand that life doesn’t have to be easy to be good.
You may come to realize that what you do doesn’t have to be complicated to change lives.
You may have to re-evaluate what is beautiful.
You may spend more time singing, and laughing, and feeling joyful.
You may have to redefine greatness.
Allison was not sent to this world to leave a lineage. She was sent to leave a legacy. She is a teacher, a mentor, a coach. There is a danger that you may have to change if you come to know her, but what a magnificent journey it is! You will love more deeply, live a life of gratitude, savor every delicious moment more carefully, complain less, give more, push harder, reach higher, and praise God’s greatness despite your trials and difficulties.
Be thankful today for hard things and what they can do to change us. Our family has trials, yes, but we also have such gifts. Our faith is strong and our love for each other is so rich. We pray that our story may pass these gifts to you as well.
Thursday, August 26, 2010 9:36 AM CDT
Allison started 4th grade this morning. I am sitting at my kitchen table worrying... Is her classroom teacher ready for her? Does she have enough information about Allison to help her learn and keep her safe? Will the aide that is new to Allison be able to anticipate her needs this afternoon? Are the kids in her classroom going to be kind to her and make her feel included? Will she make friends this year (with a child her age)?
This morning, both of my girls started school. Ashley is now in 10th grade which means she is now at the high school! I am excited for her and can't wait to hear about her day!! The emotions I feel this morning for the two girls are so different, it amazes me! I know with out a doubt that Ashley will do just fine today in a new school, I have confidence that she will be treated well by her peers and that her teachers will have no problem teaching her.
Allison is a pretty dynamic kid. She adapts well to new situations, and she can cope with alot. I just want so much for her school experiences to be positive. I need her to be happy and secure in the knowledge that there are good people around her to help her if/when she needs it. I want her to feel successful in school.
I want the same things for my girls that every parent wants for their children. Do you remember what a leap of faith it was as a parent to bring your child to Kindergarden that first day and leave them there and to learn to accept that they will be just fine. Do you remember that feeling? The worry, the fears and the tears. That is how I have felt about Allison going to school every year, and still this year even though she is in 4th grade.
So for right now, I am trying really hard to take that leap of faith again and trust that the people around Allison will wrok hard to make 4th grade a positive experience for by baby girl. To trust that she will be surrounded by kind people who will help her learn and grow and also be supportive of her.
Thursday, May 13, 2010 10:51 PM CDT Saturday May 15 is International MPS Awareness Day
I am the proud mother of two very special daughters.
Ashley is in 9th grade and growing into a wonderful young woman before my eyes. Allison is 9 years old and in third grade, she amazes me every day with her spirit!
My beautiful daughter Allison was diagnosed with Mucopolysaccharidosis type 1 (MPS or Hurler Syndrome) in January of 2003.
MPS and related disorders are genetic disorders that limit the body's ability to produce certain enzymes needed for metabolizing complex sugar molecules. These diseases are progressive and cause cellular damage which severely diminishes quality of life and dramatically shortens the lifespan of those affected.
I believe that the more aware people are of rare disorders, the less rare they become.
So tomorrow and Saturday I will be wearing purple as a sign of strength, courage and hope for all the kids of the past, present and future who will battle these terrible conditions.
Allison will be wearing purple tomorrow and passing our purple suckers and ribbon tattoos to her classmates. This will give her a chance to tell her peers about her life and how MPS affects her. Allison will also be bringing Ribbon Cards for Awareness Day for all of the teachers in her school. Please show your support by wearing purple too!
Ashley will be wearing purple tomorrow and she will also be doing a fundraiser to benefit the National MPS Society! ( SO PROUD! ) Students will pay $1 to wear a hat and will be able to purchase purple suckers and purple ribbon temporary tattoos for 50 cents each! Ashley will also have a few Ribbon cards for Awareness Day to give to Teachers.
If you would like one, Please ask her!
ND residents will be proud to hear that both of our ND
U.S. Senators, Senator Dorgan and Senator Conrad, have agreed to co-sponsor a resolution to have
May 15th,2010 Declared National MPS Awareness Day by our United States Congress! We are even Raising awareness in our federal government!
In May of 2009, Ashley and Allison made a video to help raise Awareness. I love the video and did not feel that we could top it this year, so here is a link to it again!
http://www.youtube.com/watch?v=jTdfZA1LRyo
Please, Celebrate National MPS Awareness Day with us!
Show your support by wearing purple, and sharing about an affected child that you know.
For the families of those who are newly diagnosed, you are not alone in this journey.
I also just HAVE to share a link to a slideshow of pictures from Allison's Make a wish trip in April to meet Miley Cyrus!!!
http://www.youtube.com/watch?v=QSYsKE-Jw8A
Check it out!
Friday, April 9, 2010 10:18 PM CDT I have a lot of updating to do!!! I will start by saying that Allison is doing very well!! She is walking better and better. Her stregnth and stamina is still a challenge, but is getting better slowly too. We made a video of Allison walking when she was 6 weeks post surgery...Here is a link to see it!
http://www.youtube.com/watch?v=OIK0JxEUVNk
Be sure to compare the new video to the the one we took of her walking in Nov of 2009 when the cord compression was getting SOOO bad!
http://www.youtube.com/watch?v=iGj_VAneea8
Allison has resumed all of her activities. She is in school full days and participating in chrch school and therapies. She is with friends whenever possible and loves to be on the go! Sometimes I think that this is great...other times I fear it may be slowing her recovery...
I will be anxious to see if the xray we will be taking of her cervical spine, will still look OK. Allison has fallen 3 times since the last xray. :( Each time she falls, she is extremely sore for days and days afterward. I just hope that the kid can feel good without pain or discomfort soon!! Sheis still taking Motrin 3x's a day to help her manage the pain, and there are days the she needs a dose of Tylenol on top of the motrin to be able to feel OK.
On to FUN NEWS! Allison participated in a Fashion Show to benefit the Make of Wish Foundation of North Dakota! She was THRILLED to do this! Check out all of the new pics on the photo page!! She was able to pick 2 outfits and 1 Easter Dress of her own to model, and then got to go pick out accesories at a local store called "Attitudes" (Doesn't that fit?) to wear with her clothes. There were 5 kids that had either already had a wish or were waiting for their wish to happen. We got some great local news coverage! She has already asked if she could be in this again next year! LOL
http://www.kxnet.com/custom404.asp?404;http://www.kxnet.com/news/546652.asp
NOW FOR THE BEST NEWS!!! The Make a Wish Foundation sent an email and said that they had an opportunity to talk to us about! Allison found out yesterday that she will be getting her wish to meet Miley Cyrus!!! We(all 4 of us) will fly to LA on APRIL (yes I said APRIL) 27th through the 30th Allison will be part of the celebration for the 30th anniversary of the first ever wish that was granted!! The top 30 on the Nation-wide list will get to meet Miley and have pictures taken with her!! I promise to take whatever pictures they allow me to take, and I will post when I can!!! 19 days and counting!!
MPS/ML Awareness day will be May 15th! It is coming up FAST! I plan on making Ribbon cards again this year and I am sure Miss Allison will be passing out Sucker Cards too,so If you would like one, let me knkow early and I will do my best to get you some!!! Remember to wear Purple to honor our MPS/ML Kiddos on May 15th!!!!! Spread the word/ Raise Awareness!
Thank you all again for thing of, praying for and checking on our family! It means soo much!
Thursday, March 11, 2010 8:56 PM CST OK...There have been many MPS families that are going through issues similar to what Allison went through this fall. I am going to post something that I wrote to a family that was meant to help them understand what had gone on with Allison. It started off pretty factual, then it took on new meaning to me. I needed to write some of this so we have record of it. I needed to write it down so I would be able to file it away... stop thinking about all of it so much.
MPS Families... read what you need, ignore what is too much, but please please feel free to call me if you have any questions. Send me an email and I will either call you or send you my phone number.
Allison had her c-spine decompression surgery with Dr.
James Schwender(an Orthopedic Surgeon) from Twin City Spine. He works with his PA Kate, and his partner Dr. P (?) The actual surgery takes between 3-4 hours, but there is added time to get the positioning of the patient just right. Allison was pinned into a halo during the positioning to ensure that there would be no movement while they were working on such a delicate area. We did the surgery at the University of MN Fairview because of their experience with MPS children. Dr. Schwender and his team performed a Laminectomy ( where they actually remove some bone) ONLY on C1, then Performed a Laminoplasty on C1 - C7 . The Laminectomy on C1 was necessary because of the stenosis in that area. He "hinged" the vertebrae (the Laminoplasty) by cutting into them and opening up the bone, he used plates to reinforce the bone, but NO FUSION was necessary. Allison was monitored very closely during surgery. There was an arterial line place in her foot to help them get an accurate/constant reading of her blood pressure and her heartrate. I accessed her port before we went into pre-op, and her sleepy meds were given through the port, but because Allison had to be on her stomach for the surgery, they started an IV in her wrist after she was sleeping. The actual surgery was successful. Dr. Schwender was very pleased with how it went and he is encouraged by how she is doing now. We will have more info after the x-rays we have taken at her 6 week check.
Prior to making our decision, we also consulted with a nuerosurgeon. Dr. Haines at the U of Minnesota. Dr Haines would recommend a Laminectomy from C1 - C6. He would also do fusion, by placing a rod from c1 through c6. This procedure is the traditional way to deal with c spine compression. It has been used for years and years, Dr. Haines said her performed the procedure 100’s and 100’s of times. This procedure is not exclusive of any patient. Not just for MPS patients. We felt that this procedure was more invasive than we wanted, and would affect her quality of life negatively by taking away all mobility in her neck. We felt that if her cervical spine was stable enough to go through the decompression without causing further destabilization, then we would try to take the least invasive option. Thank goodness, when Dr Schwender performed the surgery, he felt that her c-spine was stable enough that he did not have to do a fusion! Allison will keep all mobility in her neck!
Allison has had airway issues in the past. In 2008, Allison was put under for MRI, LP ect and Dr. Belani ( our usual anethesiologist) was NOT in the hospital that day. It took an hour and a half for the anethesiologist who was there to get Allison intubated. Her airway was perferated in the process. Every cold or respitory illness she got for the next 9 months caused her to go into stridor. (or Croup) Her airway would swell to the point that she would have trouble breathing, cough like a seal, and sound very high pitched with a very soft voice.
With this procedure, I pretty much told them, if Dr. Belani was not the anethesiologist, we would not go through with the prodecure. Dr. Belani was able to intubate Allison within 10 minutes of me leaving her side.
Dr. Belani requested that Allison be left intubated overnight because of the amount of fluid she was retaining after the procedure.. She was like a little balloon streched to the max. Allison has always retained fluid when she has an IV and they are pumping that saline into her. I always have the post op nurses turn the IV off!
This time, we were in the PICU and the residents would not turn volume down on the IV fluids. Allison was on Profofal (SP?) , morphine, and valum for pain throughout the night. We exubated Allison the next day, and she was still retaining a ton of fluid. Just before we extubated her...We stopped the profofal so she would wake up.. when she woke up, Jim and I were talking to her, explaining that she still had the tube in and could not talk yet, but that they were coming in just a few minutes to take the tube out. While we were waiting, just to have some fun with her, I but the hot pack that I had been using on my shoulder on Allison's leg. She got agitated and threw it back at me. I laughed at the time, but think it is important now. She had a hard time right away when they took the tube out, but we got her calmed down, and thought we were going to be OK. It was important to me to keep Allison as comfortable as she could be, so we kept her on Morphine and valum that night, and decided along with the residents that we would try an oral pain med the next day instead of the morphine. Everyone agreed that the valum should stay on board because it prevents muscle spasms. Allison had a very restless night that night, but we thought that it was because we were moved to a PICU room that had two other kids in it with us. There was something beeping all night! The next day(THURSDAY).. Allison was agitated again...still. I would guess that it is pretty normal to be agitated and a bit out of it after such a major ordeal…This is the first really major procedure that she has been through. Around 11am, Allison seemed to be perking! She was still puffy from the fluid, she was very hoarse, but seemed to be breathing OK and she was showing interest in watching her shows and having us read “Ramona the Pest” to her. We found out that they have a kids channel on the TV broadcast through the hospital that was going to have a bingo game that everyone could play from their rooms. If you get a bingo, you call it in! Allison as excited about that! Allison was due for pain meds and valum around the same time( 1pm). She had the valum, and the residents thought instead of the morphine, we would give her Oxycodone orally. She took the Oxycodone. 45 minutes later, Allison became really agitated. She started thrashing around, and shrieking. She would desat into the 80’s and I would get right in her face and tell her very firmly to calm down, and breathe! After the first major episode, Allison looked at me and said, “ WHEW, I’m OK.. I didn’t die.” I don’t even know if I told anyone that she said that. I was blown away, but I did not have long to even let it sink in at the time. My focus was on keeping her calm. She didn’t talk much at all after that. She was either in an episode, or recovering from one where she would just lay still and breathe with me or Jim holding her in her bed. We had to keep the neck brace on her during all of this, because when she became agitated, she would throw herself all over, she was hitting and kicking and pinching. There was no recognition in her eyes, but I felt like she could hear me. She followed directions from me when I was in her face telling her to calm down and breathe. She held onto my hands and squeezed when I told her to. Anything I could get her to focus on while I was trying to keep her calm. Jim and I stayed in her bed with her most of the afternoon, and about twice an hour, this would happen it was awful. My focus was on Allison and not really what the nurse was doing.. I know the nurse was talking to the residents, and calling in Respiratory therapy for Epinephrine Nebulizer treatments. The shrieking and crying was causing more swelling in her airway, and her sats were getting lower whenever this happened. This went on for over 4 hours. Finally I could not stand to watch this anymore, I was at my breaking point, and Allison was more and more in danger… I was Scared beyond scared. I called Dr. Whitley’s personal cell phone. ( He was silly enough to use It to call me the day of Allison’s surgery J ) I was frustrated that we had not physically seen a resident or a dr. in our room, I could not believe that we had been struggling for over 4 hours and NO Dr. had been in the room!! I knew that Allison needed help NOW! Dr. Whitley brought in the troops,(I think anyway) I told him that Allison was in distress, and that she was having a possible reaction to oxycodone, that she needed help NOW and I didn’t feel like she was getting any. That is when things started happening in the room. First the nurse heard me on the phone with Dr. Whitley, she went and got the dr. on the floor. The Dr. and the resident came in, Dr Braunlin was the first Doc to arrive that we knew. Dr Whitley, Dr. Utz, and Dr Rimmel followed close behind. Dr. Belani was paged, but not in the building. While everyone was arriving, Allison had the worst of her episodes yet. She was out of control thrashing and screaming this awful high pitched scream, she hit and kicked anyone who tried to touch her, and her sats dropped way way down. Jim and I were escorted from the room, and the Dr’s took over. We were told after a few minutes that they were going to have to reintubate her, blood levels came back with a dangerously high carbon dioxide level. Her airway was so swollen that she could suck air in, but she was not getting enough of the gasses back out again. They said that the levels of Carbon Dioxide in her could cause her to have these episodes… bottom line was they needed to do this NOW, she was in real danger.
Thank God, Dr. Rimmel was able to intubae her, this time through her nose. It felt like hours but I have no idea how long it was before Dr Rimmel came in to tell us that she was intubated and on the vent. When we got to see her, she was sleeping comfortably or so I thought. After a while, Jim made me go back to the hotel to try to sleep because I had been up for 48 hours or more at that point. I believed that Allison would be sedated all night and would sleep and rest, so I went. I wrote the caring bridge entry and I went to bed.
The next morning, When I arrived at the hospital (early) Allison was awake. She was restless, and Jim said she had been all night. We were still in a room with two other young boys like one under one and three years old. So I thought that it was too loud in the room for her to rest. Three patients, three PICU nurses, and some parents all in one room does not make for a restful environment. I wanted her to be able to rest and heal, so we upped the morphine dose a bit, and that seemed to help. She dosed in and out all day. That night, Since she was still retaining so much fluid, I became a horrible bitch and insisted that they turn the IV fluids down by half and give her lasix every 4 to 6 hours until her output at least matched her input. I felt like she really needed rest, and could see that she wasn’t getting enough, so I asked our night nurse to make sure to keep up the meds… We gave her just the valium at midnight, the night nurse thought that she may be having muscle spasms due to the surgery and thought this should calm her and prevent the spasms, so she could finally sleep. We had given Valium several times in the last few days, so I agreed. Allison became VERY agitated within 30 min. she jumped with every little noise in the room, and did not sleep for more than 15 min at a time the whole night! We decided NOT to give the valium again and stuck to just morphine after that. Once we cut out the valium, Allison was finally able to rest. She started sleeping most of the nights and napping a couple of times during the day. She became more responsive, and seemed to really understand us when we talked to her.
Saturday and Sunday we tried to keep Allison comfortable and calm. She understood that she could not talk because of the tube down her throat, and she understood that she needed the tube because she had a lot of trouble breathing on Thursday. We told her over and over that on Monday, the tube would come out and she would be able to talk again. When Allison was reintubated, the tube was placed through her nose. This was good is some aspects. She was able to mouth words when she was trying to tell us something, and it also allowed the swelling in her tongue to go down. The swelling in her tongue was caused by the bite plate she had in her mouth with the first intubation when the tube was in through her mouth. The tube placed through her nose was painful for her though. The vent was connected to the tube, just outside her nose. Everytime she was moved or moved on her own, it pulled in her nose a bit. It hurt! We spent a lot of time over the weekend reading books to Allison, and watching TV with her laying in her bed.
Monday came, and around 9:30am one of the anesthesiology team members came into our room and said that the team from Anesthesiology would be back to extubate Allison early afternoon. We waited, and waited. By 4pm we were not happy. No one had come, and Allison was still intubated. She hardly moved all day. She did not want to watch TV, or a movie. No music… she was stressed and just waiting for someone to come and take the tube out so she could talk and move again. Dr. Rimmel, the ENT came by early evening ( I do not remember the time) to let us know that there had been a miscommunication and it was not on anyones schedule to come and extubate Allison that day. He apologized, which was nice of him considering we know that it was not his fault, but we were very frustrated. Allison was listening to Dr. Rimmel talk to us, and when she understood that the extubation would not happen that day, she cried and cried. This caused her nose to run… bloody mucous was coming out around the tube, and snot was running down her throat causing her to need to cough. She could not cough up the secretions because she was intubated and so we needed to suction her. Suctioning someone who is on a vent is very common. BUT this is not something that we have had to deal with before this surgery… The nurse would remove the vent from the tube, causing Allison to feel like she could not breathe, then she would thread another tube into the tube in Allison’s nose until it was down deep enough to force Allison to cough, and the smaller tube would suck up the secretions that were in there. It was very traumatic for Allison to be suctioned. We would have to hold both of her hands and make sure she could see us well enough to look in our eyes and concentrate on us or she would panic.
This was as far as I got in writing our journey with this surgery, I will quickly wrap it up....
Allison was finally extubate at 9:30 on Tuesday morning... She did really well. She was moved from the PICU to the regular pediatric unit that same afternoon. Allison continued on Motrin and Tylenol around the clock for pain, with nothing stronger than that. Allison started eating and drinking tuesday afternoon and continued to do well through the night. We were discharged from the hospital around 4:30pm Wednesday. Allison was really weak, but medically stable. We stayed at the hotel in Minneapolis that night just to make sure that Allison was strong enought to make the 7 hour trip home the next day.
Friday, February 5, 2010 9:12 AM CST Happy Birthday Allison!!! Allison is 9 years old today!
Wednesday, January 27, 2010 10:06 PM CST Allison went back to school for half of the day today! When we arrived at Allison's classroom, it was dark inside. We went in, and students jumped out from behind desks to yell "Welcome Back Allison!!" It was so cute to see the look on her face! She felt like a Star! I have to admit, I was a little teary! It is so good to know that Allison has good friends and that they missed her while she was gone. She will be back in school tomorrow morning, and Friday Afternoon, She is THRILLED to be back!
She is doing really well, and bouncing back faster than I imagined she would. She may even be walking a little bit better than before the surgery! We have been told that it will take 6 -8 months to see the full benefit of the surgery, but I AM seeing small improvements already!
Allison will have to wear the neck brace for another three weeks (6weeks total) then, she should be stable enough to go without it! I believe taht we are going to send an xray to her surgeon sometime next week, and hopefully we will hear a great report!
Allison turns 9 on Feb 5th! I can hardly believe it!
Thank you all again for all of the thoughts and prayers throughout the last month, we have really appreciated all of it! Thank you to Miller School staff and students for making Allison feel so loved
Friday, January 15, 2010 9:19 PM CST I need to start this entry by saying a great big thank you to all of you that have kept Allison and our family in your thoughts and prayers. You all held us up through this roller coaster of a time. Knowing that there were so many thinking of us and praying for the health and safety of my girl... there really are no words to describe the feeling. Thank you
The picture above was taken the night after she was extubated (the second time) on Tuesday the 12th. Breathing on her own after 7 days!!!
Allison was released from the hospital on Wednesday late afternoon. She told us wednesday morning that she WAS going to go home, even if she had to sneak out of the hospital and take a plane back to Bismarck. lol We stayed at the Radisson that night, just to be cautious. Allison was very weak, and still not breathing the best. She was off all medication besides motrin, Tylenol and her antibiotic. We wanted to be sure that she would be strong enough for the 6 to 7 hour car ride home. She did very well on Wednesday night, and we started our journey home Thursday morning.
The trip went very smooth, we were surprised! She slept a bit and listened to Junie B Jones Audio books! Allison was so excited to get home and see her sister and her Aunt! I think she over did it a bit right away when we got home, because by 4 pm she was starting to wheeze. We tried to gt her to take it easy, but she had too much to tell her aunt and her sister, and was just so happy to be home. Allison's breathing got worse as the evening progressed. We gave her a dose of oral steriods at 4:30 but she was still having so much trouble breathing and she became very anxious about it. After the events of last Thursday, I was getting anxious too! We ended up laying with her to try to keep her calm, giving her a second dose of steriods (at 10:30) and holding her until she could finally calm down and breathe well enough to sleep at 3am. It was another long night! Allison's poor little airway has been through way too much in the last two weeks, it will take time to heal. We made a trip to her pediatrician this morning and we have a few nebulizer treatments, and a different antibiotic to try to help Allison feel better and let her airway heal. It will be a stressful next couple of days, but hopefully after that she will be on the mend!
The actual surgery went very well for Allison and it is odd, but I think we may already be seeing a few positive differences~! I will talk more about that as time goes on and I am sure that I am not just imagining things :) I want to see improvement, so I have to be sure I really am seeing some before I go into detail! Her incision site is healing nicely and she does not complain much of pain from the incision. She is pretty much just taking motrin now for pain along with the occasional dose of Tylenol.
Allison was in the PICU for 7 days, laying on her back and not moving much at all. Some of that time she was fully sedated, but most of the time she was only partially sedated. Her little body has lost soo much strength. We will get her moving slowly but surely as soon as we get her airway under control.. Breathing must come first! We can't allow her to backtrack and end up back in the PICU and intubted again! NO WAY! So... that being said, Allison would indeed love to have visitors, but we need to be sure those visitors are healthy, and limited in numbers for the time being. We are seeing Allison gain strength back fairly quickly, but at the same time, if she over exerts herself, the airway issues return.
Thank you again for checking on Allison, and keeping our family in our thoughts and prayers. If I never see anothe PICU, it will be too soon!!! It is so good to be home!
Sunday, January 10, 2010 11:51 PM CST hi ~ Allison has had a pretty good day. We have been weaning her vent settings so by the end of the evening tonight, she is on the lowest settings. We hope that she will do well all night on those settings to help us determine if she is ready to get off of the vent tomorrow. She continues to be awake most of the time. She slept better last night... dosed in and out for a while then slept solid from 1 -5:30am. which is the longest she has slept in one strech without waking up for days.. No naps for Allison today though. SHe was groggy today, so she lyed around most of the needing someone (jim or I) to hold her hand or lay with her.
Please say an extra prayer for Miss Allison tomorrow as we decide wether she is ready to come off of the vent and hopefully extubate her. she is very anxious about not being able to breathe. ( and I can't blame her!) I have no idea what time they will decide IF we will extubate, and if they decide that we will, I have no idea what time it will happen...
I will try to update if I can, but I am anticipating that if we do extubate Allison tomorrow, I will need to be by her side all day, making sure she is not getting anxious and she remembers to take deep slow breaths. I will answer the phone when I can, and whoever I talk to first I will ask to leave a guestbook entry with an update and/or post on my facebook profile. Thank you all for the support and prayers, we appreciate it more than you know! We have so many people checking on and praying for my little girl that it moves me to tears to see all of the guestbook entries and posts to facebook everyday!
Sunday, January 10, 2010 11:51 PM CST hi ~ Allison has had a pretty good day. We have been weaning her vent settings so by the end of the evening tonight, she is on the lowest settings. We hope that she will do well all night on those settings to help us determine if she is ready to get off of the vent tomorrow. She continues to be awake most of the time. She slept better last night... dosed in and out for a while then slept solid from 1 -5:30am. which is the longest she has slept in one strech without waking up for days.. No naps for Allison today though. SHe was groggy today, so she lyed around most of the needing someone (jim or I) to hold her hand or lay with her.
Please say an extra prayer for Miss Allison tomorrow as we decide wether she is ready to come off of the vent and hopefully extubate her. she is very anxious about not being able to breathe. ( and I can't blame her!)
I will try to update if I can, but I am anticipating that if we do extubate Allison tomorrow, I will need to be by her side all day, making sure she is not getting anxious and she remembers to take deep slow breaths. I will answer the phone when I can, and whoever I talk to first I will ask to leave a guestbook entry with an update and/or post on my facebook profile. Thank you all for the support and prayers, we appreciate it more than you know! We have so many people checking on and praying for my little girl that it moves me to tears to see all of the guestbook entries and posts to facebook everyday!
Saturday, January 9, 2010 7:53 PM CST
Sorry for the delay in updates! I hope info has been relayed to some of you one way or another! Allison was pretty aggitated from the time she was reintubated up until this morning. I have hardly had a minute to shower, much less call people! Sorry! Anyway, I think we have figured out why... Last night, she seemed to be a bit feeling a bit better, but she still had not slept much at all even with all of the sedation meds in her, it was like she was fighting against the sedatives so she would not fall asleep, and if she did, it was for just a few minutes. Anyway, I thought for sure she was ready to sleep.. The intesivists, nurses and I had talked about some of the side effects of the Morphine that she has been on, and decided that because Allison was complaining of stomach pain, the morphine could be making her constapated. We thought that we would try to stop the morphine and just give her valium and motrin and see if we could control her pain. Somewhere between 11 and 12 mindight Allison needed some pain meds, we had not given any morphine for about4 hours so we knew it was out of her system. We gave the valium, and Allison became really aggitated and anxious.. she did not sleep for more than 10 min at a time all night and the anxiety and aggitation continued. We took Valium off of the list of medication that Allison can get, and now we are going with Motrin and Morphine. She has been able to rest some this afternoon, and I expect that she will sleep well tonight!
Allison continues to run a temp, but the cultures came back and showed that she has a urinary tract infection. We started the antibiotics yesterday... she is still retaining water, but had a dose of lasix today and seemed to have a better ouput...I did not get the actual numbers before I left the hospital...
Please continue to pray that she is turning the corner and will have a much better day tomorrow! Pray for rest for her tonight, and some of that spunky personality to come out tomorrow!! Thank you all so much for your kind thoughts and prayers, and know that it has lifted us up and helped us to get through the scary days.
I am back at the hotel to try to get some rest, It has been a long 36
hours!
Oh I almost forgot: It looks like the plan may be to extubate Allison in the OR on Monday morning. I do not have a time as of yet, but please pray that the dr's feel she is ready and that she tolerates being extubated well. She is very traumatized by the events of Thursday. She is afraid of not being able to breathe, and gets anxious when we have to suction her right now because we have to disconect the vent to do it. She can breathe when the vent is diconnnected, but I am sure it feels very different. We have a great team of Dr's to help make sure Allison is safe, but we will need many prayers for this!
Thursday, January 7, 2010 9:32 PM CST I am not sure where to start with today.... I almost lost her, but Thank God she is still here and she is stable and resting well right now.
Allison has had a lot of swelling in her upper airway, and she has been retaining a lot of water, even with Lasix on board. Her body was so full of fluid and her airway was so swollen that she has been having a hard time breathing. You could hear every breath that she took. around 1pm today, she started to get very aggitated, she would shreik in that little hoarse voice of hers and she flailed around. She hit, pinched or kicked everyone around her and when she looked at me there was no recogition in her eyes. We held her down so she would not damage her fragile spine or pull out any more tubes that were in her, the Dr's in the PICU tried different drug combinations to get her to breathe better and to calm down. Her pulse raced over 180 beats per minute for a good portion of the afternoon and her blood pressure was sky high. At 5pm, I could not take it anymore and I called our geneticist and asked him to come. Our Cardiologist, geneticist, ENT, and Medication management person came immediately. Thank god! We figured out that her blood gases were off. Her carbon dioxide level was really really high. Allison had been getting air into her body, but had not been able to release the carbon dioxide in her system. The team decided to try a higher dose of morphine and another epenephrine nebulizer treatment... Allison's vitals got worse fast, and her oxygen levels dropped. we were asked to leave the room so they could intubate and sedate her again. Jim and I were ushered to a family conference room and left there to wait to hear if our baby girl was still alive.
Thank God, they were able to intubate her and sedate her. Allison's vitals are good again, and her blood gasses have returned to normal. The dr's feel that she should not have any permanent damage to overcome because she was never deprived of axygen... The plan for now is to keep her sedated and intubated until at least monday. If everyone feels that her little body has healed enough, then she will go to the OR to be extubated with Dr Belani.
Thank you so much for all of the thougths and prayers for miss Allison. please keep praying that she gets through this. Thank God I did NOT loose her today.
Thursday, January 7, 2010 6:23 AM CST Allison has had a rough go of it. Yesterday she was finally extubated around 4pm. It took a while for her to start breathing well, but she started to sound a bit better by 6 or so. Her throat was very sore and her pain level was hight. We seemed to get her pain under control for a while, and she was semi comfortable. She is still retaining a lot of fluid, we need her output to at least as much as she is taking in through her IV's.
last night was really rough, she has had to have nebulizer treatments about every 4 hours and she sounds like she is in stridor. Her little airway is so swollen that it is hard for her to breathe comfortably.
Allison is awake, and I am updating on the hallway computer, so I have to go. I will try to update more later, but please pray that we can find a way to make her more comfortable and that the swelling in her airway goes down FAST!
Wednesday, January 6, 2010 6:10 PM CST Hi This is Tami again!
Jenn asked me to update. Allison is doing good and is off the Vent!! She is breathing room air. Doing the happy dance!
Not a great day for her, but we have happy news! I ask that we all keep them in our prayer and to our local families please do not visit quite yet. She had a hard day and is still in the PICU.
I pray she will be out of the PICU tomorrow and ready for company. And an major email blast for our sweet Allison!!! Keep checking back for updates.
Hugs to all from,
Jenn!
Tuesday, January 5, 2010 10:02 PM CST This is Tami,
Jennifer wanted me to do a quick update. Allison is out of surgery and doing well. They took her to ICU and is doing great. They did C1 to C7 and are keeping her intubated until tomorrow. Jenn will update more tomorrow but wanted everyone to know she is doing well!!
Please keep them in your prayers!
Hugs from Tami!!!!
Tuesday, December 29, 2009 10:59 PM CST I know... It is way past time that I update this site. Here goes. Miss Allison is having major problems with Spinal Cord compression. I have posted a video of Allison walking on You Tube : http://www.youtube.com/watch?v=iGj_VAneea8
Allison's mobility has seemed to go downhill fast, and now, it is even worse than in the video.
We have made a decision on what to do about this, and could really use our prayer chain to help us out! Allison will be having surgery on Jan 5th for cervical spinal cord compression. She has spinal stenosis from C1 through C6. Dr. Schwender will be our surgeon and he will use a procedure that is a laminoplasty type porcedure where they do not remove the lamina but will open the lamina in such a way that they will increase the room available for the spinal cord. This procedure is much less invasive than our other surgical option, and the Dr. Does not plan on doing a fusion, but of course if they get into surgery and the damage is more extensive than the MRI looks, then we will go from there.
The surgery is scheduled to start at 1:30pm on Jan 5th. Please Please say an extra prayer of two for my baby girl. It has been so hard for her to understand why her body is not working for her like it should. She is frustrated and in pain. My heart aches for her, and I just want to help her feel better! I think this week has been extra hard because we have had to stop giving her Motrin for her pain. Motrin is a blood thinner, and she cannot have it for 14 days before surgery. She can have Tylenol, but it just does not help very much.
We will leave for Minneapolis on Jan 4th, and will have the procedure done at the University of MN Fairview Campus. If anyone needs to get ahold of me, please send me an email or a message on Facebook, and I will try to get back to you as time allows. I will also update throughout the day on Facebook, and hopefully have a full update posted on Caringbridge sometime on Wednesday. The actual surgery should last between 3 to 5 hours, but because we will not be starting until 1:30 pm, it will be a very long day. Allison would love to have visitors anytime starting on Wednesday. She is very social and company may lift her spirits :)
Please forgive my random thoughts... There is just too much to think about right now to put them in any coherent order... Thank you to all of our friends and family that will be praying for Miss Allison... I believe in the power of prayer, and that will give us the strength to get through this.
Wednesday, November 18, 2009 9:35 PM CST What a day! Well, we met with the neurosurgeon this afternoon and went over the results of Allison's MRI. Allison has some additional narrowing in her cervical spine. It is more narrow than it was in August, but not by much. THe Neurosurgeon would like to set up a spinal cord decompression surgery within the next few weeks. He would take off some bone to open up the area and fuse c1 -c4 together. The fusion would have to be done because when the bone is removed, it would create more instability in her cervical spine. There would be a rod placed to help create the stability, and that would result in Allison not being able to move her neck in many ways, She would no longer be able to nod yes or no, she would not be able to turn her head to the side or look over her shoulder, she would not be able to look at the floor or at the ceiling... her whole body would have to turn for her to be able to look in any direction. The neurosurgeon feels like Allison would benefit from this surgery, but can not garuntee that the symptoms she is having right now would ever go away. He has had experience with only a handfull of children with MPS and Spinal Cord Compression. (which still makes him one of the most experienced)
Doing nothing ever is not an option... If we do nothing, then over time Allison will get worse, and eventually ... well I can't go there...
My plan for tomorrow is to get another opinion from the spine Dr that we usually see here in the cities. I hope he is able to squeeze us in, but even if he could review the MRI and x-rays and go over them with me by phone, it would be helpful.
I am also talking with the rest of the team of Dr's that Allison sees here...It was explained to me by the Geneticist that the GAG build up accrews over time. The body has amazing ways to compensate, until it can not totally compensate any more... Allison is having symptoms of spinal cord compression but she could stay just the way she is now for months or even a year... He feels that we have some time to research and go over our options. We do not need to rush into anything.
Another option we have to consider is Intrathecal Infusions of Aldurazyme. There is a clinical trial going on in California where Aldurazyme is being infused into the spinal fluid. The hope is that this will help reduce the GAG build up in the spinal column and reverse some of the Spinal Cord Compression.
There are pro's and con's to each of our options.. please pray that we are able to gather the information we need to make the best decision for Miss Allison. Quality of life is so important.... But dang! I want Quality AND Quantity for her! I had a big ol pity party this afternoon, and now I am pulling myself up and gearing up for research. We are leaving for home on Friday morning and for now are going to put her on a theraputic dose of Motrin to see if this helps reduce some of the inflamation in her cervical spine and lighten the symptoms that she is currently having.. or at the very least keep her more comfortable.
Monday, November 16, 2009 9:43 PM CST Today started out with a stress test on Allison's heart. They gave her a drug to speed up her heart and make her body feel like it was running full speed! At one point, Allison made the comment that she felt like she was reunning the Boston Marathon! LOL she said that her heart was just pounding in her chest. Then she went on to tell all of the people in the room that her first grade teacher actually DID run the Boston Marathon and finished it! The Cardiologist and the person in charge of doing this stress test said that Allison's heart was pumping strong and hard...It looked "normal" Allison quickly told them that "normal is just a cycle on the washing machine" Little turkey had the room in stitches most of the time we were in there. After they got Allison's heart pumping like crazy and her blood pressure was through the roof, then they gave her a med to SLOW her heart down... and let us go on our way. They said that her heart rate should go back to normal, and I shouldn't worry if she just fell asleep! Luckily, she stayed awake and appeared just fine for the rest of the afternoon, I am pretty sure that I would have worried if she had just passed out asleep shortly after they gave her medication to slow her heart!
We went from the stress test to the EKG, and Allison still has a 1st degree AV block, which means that the electical signal between the chambers in her heart is sluggish. This has been an issue for her for about 4 years, and has slightly progressed but not enough to make it a 2nd degree heart block... so just what we were expecting with the EKG.
Then we saw a whole slew of Dr's starting with our Genetic/Metabolic Dr. The Neurologist, neurosurgeon, and Cardiologist stopped by our room to talk to us, and there was also someone from the Medication Management team. Were were back a room on the 4th floor from 1-5pm talking to Dr's. Allison put her "best foot" forward so to speak and walked better with more balance and steadiness than she has in over a month! Little Turkey! I did video tape her walking at her worst last week when we were home, but of course, I forgot the video! OH WELL, I am sure that the Dr's will see what they need to see with the MRI and the X-rays that they will be doing tomorrow.
We have no scheduled appts after tomorrow... that scares me a bit. I would like to have a time set up to meet with the Docs again and go over the results of the MRI and x-rays... I would hate to sit here for days with no appointments waiting for someone to contact me, but at the same time, I do not want to go home with no answers either, then have to turn around and come back because someone saw something on the MRI. Hopefully someone will get back to me about when Allison's team of docs can go over the test results and come up with a plan!
On a brighter note, Allison is LOVING the Ronald McDonald House! She is so excited about the scheduled activities, she sounds like she is here for a vacation! LOL We walked in the door at 5pm from appointments all day, and Allison would not even go into our room! There was an arts and crafts activity set up in the main room and she stopped and joined right in! Tonight was Wii night, they set up 2 Wii's and all of the kids took turns playing the Wii for an hour and a half! She had a blast! Tomorrow afternoon there will be some Vickings football players here to help with the " Operation Christmas Child" We will be having a packing party! Allison brought the Vickings winter hat that her Dad gave her and plans on wearing it while the Vickings football players are here. She is even planning on getting an autograph or two!
Thank you so much for all of the prayers!
Sunday, November 15, 2009 10:31 PM CST Allison has been having some concerning issues lately... We could use a few prayers for her! Alli has been complaining of her legs going numb when she sits too long, her walking has changed drastically in the last 6 months and seems to be going downhill fast. Her stamina is also drastically reduced.
About two weeks ago, Allison took a little fall in our bedroom. She landed on a blanket that was on the floor. The fall itself was really nothing that would have hurt her, in fact she laughed because she was trying to step over the blanket and instead she fell. When I went to stand her up, her legs shook. This is hard to explain... it was like they tremored. This lasted about 30 seconds. She thought that it was really weird, I was scared. I started watching more closely, and I noticed that I saw her leg or legs tremor at least once every day! Talking to Allison about how she felt was another alarm. She describes her legs as feeling like "jello" lately. If you have seen her walk in the last few weeks you will agree that it looks like her legs feel like jello too. I think that the Dr's are going to find Spinal Cord Compression. I HOPE I am wrong!!!!
Anyway...to make a long story a bit shorter, I have been in contact with Dr's in Minneapolis and Allison and I got in the car this morning and are now at the Ronald McDonald House just a few blocks from the Fairview. Allison was amazing in the car, she (we) listened to Junie B Jones Audio books on CD for most of the ride (8 hours to get here including MANY bathroom breaks) Thanks for letting us borrow the Audio Bookds Roxane and Liz!! Alli loves them!
We will start our appointments tomorrow morning, and likely be here for at least a few days. My prayer is that they find what is causing the changes in Allison, and there is a way we can make it better that is safe for her. I will try to update again tomorrow.
Thanks for all of the prayers
Friday, October 16, 2009 8:44 AM CDT I sent this out via email last week, but I wanted to make sure everyone saw it, so I am posting it again! The LA walk/run for MPS is TOMORROW!! Please if you can, make a donation to the National MPS Society to help us fund research and find a CURE for all types of MPS and ML disorders! There a 2 ways to make a donation, you may donate online, or you may send a check directly to the MPS Society details on how to do that are below! Thank you! Remember every dollar raised goes directly to RESEARCH
Sponsor a child for a CURE
Many of you know our daughter, Allison, was diagnosed with Mucopolysaccharidosis (MPS) 1 in January of 2003. MPS is a rare Lysosomal Storage Disorder. We are very fortunate because there is a treatment for MPS 1 that is available for Allison. She receives and IV infusion of a drug called Aldurazyme every week. This treatment has and will continue to slow the progression of her disease.
Unfortunately, treatment is not available for all types of MPS and ML disorders. Time is of the essence for all of these kids, even the children who have treatment. We need a cure!
For Immediate Release: (Public Service Announcement about the Walk/Run)
Most Americans are not aware that a child is born every 30 minute with a lysosomal storage disease. MPS (mucopolysaccharidosis) is one of these rare diseases. Children are diagnosed each day and suffer physical pain before they lose their battle.
The National MPS Society has been working for 35 years to support these children and their families from coast to coast. We provide hope and support for affected individuals and their families through research, advocacy and awareness of these devastating diseases.
On October 17, 2009, come walk and run in the beautiful foothills of La Verne and Walk for A Cure for MPS and related diseases. Every single dollar raised is directed to research. Help us in the fight against rare diseases. Come make a difference, because children have a right to life.
For more information please visit www.mpsrun.com and make a donation online or contact the Race Director for details on how you can participate in La Verne and help find a cure for all the children suffering from MPS and related diseases.
The National MPS Society fund raiser that is coming up on Oct 17th, 2009 in LaVerne, CA, is an annual walk /run that is dear to our hearts because we were able to attend in 2003, the year that Allison was diagnosed with MPS I. The MPS/ML families in that area were the first families we met face to face after we received the diagnosis for Allison. It was the most amazing weekend, they made us feel like family the second we arrived! To have Allison be a part of their day would mean a lot to us!
This year, there is an option for families that cannot attend the event to have a runner represent their child!
It is the “Sponsor a child for a cure” program. A Runner will be designated to run in honor of Allison and wear her picture on his/her shirt. Allison will receive a picture of the runner as well as his/her time in the 5k. She will also receive a metal in honor of the “Courage” she shows everyday in facing life with this disease. I would love to have a runner wearing a picture of Allison at the walk/ run! What a wonderful way for her to be part of this day! If you would like to sponsor Miss Allison by making a donation for the LA walk/run there a couple of ways to do it:
you can go to: www.mpsrun.com and along the right hand side there will be a link to Donate, click the link and follow directions to donate immediately OR you can send a check to:
The National MPS Society
P.O. Box 14686
Durham, NC 27709
on the memo line, please write: in honor of Allison ~ LA run.
Every Dollar raised goes to research !
If you would like more information about MPS or ML disorders, go towww.mpssociety.org
If you would like to visit Allison’s caringbridge site, go to :www.caringbridge.org/nd/allison
Please feel free to forward this message on to anyone you think may be interested!
Thank you!
Thursday, October 1, 2009 12:55 AM CDT I thought that it was about time to update Allison's site! Allison's annual appointments went alright. Here is a quick run down the appointments
Dr. Walker @ Gillette ~ Allison's pain from her knees is stemming from her hips, we were told to work on strengthening her leg muscles in hope that it will lessen her knee pain. Surgery on her hips and knees is highly recommended. This will come down to a quality of life issue for Allison, so we are going to go ahead and start to plan the surgery. We will need many prayers around the time of this surgery!
Dr. Braunlin Cardiologist ~ Allison had an echo and a 24 hour Holter Monitor test on her heart. Overall there is not much change; It looks like the walls of her heart are a bit thicker than last year, but not enough to be too concerned about. Her PR interval is a bit slower than last year too, but again nothing that will require daily medication, just annual monitoring.
Dr. Whitley Genetic and Metabolic specialist ~ Our visit with Dr Whitley was a little rushed this time because he was on his way to a conference on Krabbes! He did introduce us to the Medication Management team, and we have decided to have Fairview Pharmacy ship us the Aldurazyme that Allison is on! This has been a very positive change so far, I hope and pray that the medication can be billed under pharmacy benefits, and no longer count towards Allison's lifetime max! That would be HUGE for us!
Dr. Phillips Pulmonologist ~ Dr Phillips was concerned about the episodes of Strider (sp?) that Allison had this year, and would like us to monitor that closely. Allison had a PFT and that apparently was unreadable... The PFT is a test to gauge lung function
MRI~ She had an MRI of her brain and Cervical Spine, and she did it WITHOUT sedation! WTG Miss Allison!
Neuropsychology Testing ~ This testing lasted about 3 hours, and Allison did very very well! She is testing in the average range for many areas and low average in a few. Her motor skills are delayed, but we know that... We are very happy with the results of the testing and Thank Dr. Bjoraker so much for the detailed written report! This report always helps us so much when it comes to Allison's IEP meeting!
Dr. Bothun Ophthalmologist ~ The corneal clouding in Allison's eyes has remained stable! Good news! Allison does have astigmatism in both eyes, so he did write us a prescription for glasses. Her overall vision is slightly better than last year, so we are still unsure if we are going to fill that prescription... Dr Bothun said that the glasses may help, and she may not notice a difference. I just wonder if Miss Allison would wear the glasses! LOL she has 15 pairs of sunglasses that she HAD to have, but will not keep any of them on for even 5 minutes. We will see...
Dr. Rimmel ENT~Dr. Rimmel says her T-tubes are still in and open! Good news!
Dr. Rothman Neurologist ~ Dr. Rothman does not feel that Allison is showing physical signs of Spinal Cord compression at this time, we do know that Allison has spinal cord compression to a certain degree because it has been seen on the MRI's but He thinks that there is NO noticeable change in the MRI's over the last couple of years and would like for us to continue to monitor her, and let him know if Allison has any changes in her walking or her strength in her arms.
Dr. Schwender @ Twin City Spine ~ Dr Schwender is our Orthopedic Dr for Allison's spine. He feels that Allison has a slight kyphosis and a slight scoliosis but nothing that we would do anything about at this time.
I also wanted to let our readers know that there is a MPS Society fund raiser that is coming up on Oct 17th, 2009 in LaVerne, CA. This annual walk run is dear to our hearts because we were able to go in 2003, the year that Allison was diagnosed with MPS I. The families in that area were the first families we met face to face after we received the diagnosis for Allison. It was the most amazing weekend, they made us feel like family the second we arrived! To have Allison be a part of their day would mean a lot to us!
This year, there is an option for families that cannot attend the event to have a runner represent their child! I would love to have a runner wearing a picture of Allison at the walk/ run! If you would like to sponsor Miss Allison by making a donation for the LA walk/run there a couple of ways to do it: you can go to: www.mpsrun.com and along the right hand side there will be a link to Donate, click the link and follow directions to donate immediately OR you can send a check to:
The National MPS Society ~ P.O. Box 14686 ~ Durham, NC 27709 on the memo line, please write: in honor of Allison ~ LA run. If you would like more information about MPS or ML disorders, go to www.mpssociety.org
As always, thank you for checking on our family!
Saturday, August 8, 2009 4:55 PM CDT Well, We are packing up and getting ready to leave for Allison's annual appointments. We will leave in the morning hopefully between 8 and 9am. Allison has appointments Monday - Thursday. Here is our schedule:
Monday Aug 10th
8:30 Echo
11:30 Dr. Walker @ Gillette
2:30 Dr. Braunlin
3:00 Dr. Whitley
Tuesday Aug 11
10:20 PFT
11:00 Dr. Phillips
Wednesday Aug 12
7:45 MRI
9:00 Neuropsychology Testing!
2:15 Dr. Bothun
4:00 Dr. Rimmel
Thursday Aug 13
8:45 Dr. Rothman
1:00 Dr. Schwender @ Twin City Spine
Please say an extra prayer or two that the appointments go well, This is the most stressful week of the year for Jim and I. Allison however, doesn't mind going!LOL She gets a lot of attention from quite a few different people while we are there! I will try to update the site each night after her appointments. We are going to try to get to do some fun things too!
Tuesday, May 12, 2009 9:33 PM CDT May 15th, 2009
National MPS/ML Awareness Day!!!
It is time to get out your purple ribbons! May 15th is National MPS/ML Awareness Day and we are celebrating! We have Purple shirts, Purple wristbands, purple suckers and purple ribbons!
My daughter, Allison Restemayer, is in second grade this year at Robert Miller Elementary. Allison was diagnosed with a rare genetic disorder, Mucopolysaccharidosis or MPS type 1, just before her second birthday.
MPS disorders are genetic disorders that limit the body's ability to produce certain enzymes needed for metabolizing complex sugar molecules. These diseases are progressive and cause cellular damage which severely diminishes quality of life and dramatically shortens the lifespan of those affected.
I will be bringing purple ribbons to the office at Robert Miller for those of you who would like to join us in celebrating National MPS Awareness Day. Please wear purple and/or your purple ribbon proudly in honor of the COURAGE children with MPS disorders, like Allison, show.
If anyone else would like a purple ribbon (in the Bismarck area) please send me an email and I will try to get one to you!
Ashley and Allison are teaching us what it is to raise awareness, they have a video that has been uploaded to You Tube, check it out! Raising Awareness: “In Their Words”
http://www.youtube.com/watch?v=jTdfZA1LRyo
Those of you who work within Bismarck Public Schools will have to use the username and password that is sent to you in an email each week to watch this video from a school computer!
For more information on MPS disorders, Please visit:
www.mpssociety.org
To visit Allison's website, go to:
www.caringbridge.org/nd/allison
Please sign the guestbook and let Allison know that you took the time to visit, she loves to get new messages!
One last request: Please forward this email on... to everyone and anyone. There are more children out there with a similar diagnosis, and unfortunately there are more to come. One of our family's biggest challenges has been having to explain over and over again what MPS is and what it does. If we can make people aware of rare disorders like MPS, it will make a difference.
Thank you,
Jennifer Restemayer
Wednesday, March 4, 2009 9:46 PM CST Please go to www.stirringupwishes.com! Betty Crocker is giving away 12 wishes to 12 children through Make-A-Wish and needs people to go online to their site to vote for which chapters receive those wishes. You can vote every day! I would like for you all to vote for the North Dakota chapter, of course, but vote for which ever one is closest to your heart. No matter how you vote a child will win! You do need to sign in at Betty Crocker first, but it only takes a second. North Dakota is the yellow dot at the very top center of the US (just in case you don't know where ND is!)
I copied this first paragraph from another caringbridge site, but I echo Carolines mom! Please take the time to vote for a make a wish chapter! Allison is in the process of applying for a wish. It sounds like wish granters will be calling in the next week or so to set up a time to hear Miss Allison's wish! Make a Wish Foundation sent her a birthday card last month, and they have not even met her yet! I have heard such wonderful things about the Make a Wish Foundation, and heard about how special they make each child feel... What a wonderful organization!
Please say an extra prayer for all of our MPS babies, there are some that are struggling SO much tonight...
Sunday, February 1, 2009 9:29 PM CST ****NEW PICTURES **** NEW PICTURES ****
We have had a busy few months since I last updated! I hope all of our loyal readers understand that with us No news IS good news! LOL I have been terrible about updating, but I will continue to try!
Allison is doing well. She has had her usual colds, ear infections and sinus infections this winter, but other than that (knock on wood!) has been relatively healthy! February is going to be an action packed moth for Miss Allison! Feb 5th is Miss Allison's 8th birthday! Eight years old! That is so hard to believe. Time goes too fast! Then, Feb 15th, Allison will have infusion # 300! She has decided that she would like to go to Johnny Carinos for supper on her birthday and to Space Aliens for supper on the evening of her three hundreth infusion. We think both events warrant a celebration so I guess we will go where she wants us to go for her special occasions!
Jan 10th was my sisters wedding! Jessica and John had a beautiful wedding in Marshall, MN. Allison was a flower girl and I was the maid of honor. CHECK OUT THE PICTURES! They are beautiful! There are some others that I wanted to put up, but I copied them to my computer off of facebook, and they will not upload on the caringbridge site! If you have facebook and want to see more pictures, look in my photo section!
For all of our ND friends, please keep an eye on the Legislative session in ND! There are some important issues for Children's Health Insurance that have come up! Please pay attention and write to your legislators if you wish!
There was a You Tube Video that I recieved in an email that is raising awareness for Rare Diseases like MPS! Please take the time to watch, I am sure you will learn a little! It will not make you cry, it just makes you think!
Video is here on YouTube:
http://www.youtube.com/watch?v=XXS1OU-X9o0
Saturday, October 11, 2008 5:18 PM CDT Wow! It has been a long time since I have updated Allison's site! Allison is doing pretty well. She is loving second grade and is lucky to have some good friends in her class this year. We decided that it was time to start using the FM system for Allison at school. The FM system attatches to Allison's hearing aides, the teacher wears a microphone, and when the teacher talks.. her voice goes directly into Allison's hearing aides. This will cut down on some of the background noise and make sure that Allison hears the lesson that the teacher is teaching. We just started using the FM system last week, so it is a little soon to tell if it is helping her yet...but hopefully it will!
We have been plagued with illnesses this fall! Our whole family had a flu type virus last week and we have also had a few cold already! This is a problem for Miss Allison! When Allison was intubated in August, it caused so much damage to the tissue in her airway that each cold she has gotten since the intubation has caused her to sound like she has CROUP! The damaged tissue in her airway starts to swell and she ends up whistling when she breathes! It sounds awful, and is very scary when she tries to sleep. Fortunately, one dose of oral steroids brings the swelling down within hours and she can breathe easily again. Lets hope that we can get well and stay well for a while! Allison could really use a break!
We went to the Pumpkin Patch on Thursday, and I was able to get some GREAT pictures, so be sure to check out the photo page!
As always, Thank you so much to everyone that checks on Miss Allison and says a prayer or two for her, we appreciate it more than you know!
Allison says:"I'm good and I listen in school and at home"
She thought she needed to type too :)
Sunday, August 10, 2008 1:39 PM CDT We Are HOME!
Well ~ It was a long week! We started Tuesday with Developmental testing ~ Good news there, Allison is still doing great! There are some areas that she has gone down in, but those have to do with fine motor testing. Overall, Allison is still testing out at an age appropriate level! Dr Shapiro and Dr Bjoraker are still perplexed by Miss Allison and are unsure why she has not regressed :? I for one am very happy that they are confused :lol:
Next we saw Pulmonology : Good news there too. I love hearing the word STABLE !
ENT: Dr Rimmel felt like taking out her Tonsils and Adenoids was too big of a risk with not enough benefit to justify the risk. I was very happy that he was so matter of fact with us about this! He said with most children, doing a T&A would help with the sinus and ear infections, but for MPS kids, there were too many that had major complications, some deaths resulting from airway issues, and not much benefit. Many have continued to have the same ear and sinus issues after the T&A because of the MPS build up in their sinus cavities and ear canals. So, Dr Rimmel is going to make a few recomedations in his write up of our appointment, He wanted to see how the sinus CT and the placement of new "T" tubes in her ears went before he made concrete recomendations. We also did a hearing test, and it looks like her hearing is a little bit worse :frown:
Neurology: STABLE! Yeah! Allison looks pretty good again from the neurologist view. We did ask about why Allison has been walking on her toes so much lately, and he felt that it is NOT due to spinal cord compression, so that is wonderful news! Dr. Charnas feels there may be an orthopedic reason for her toe walking, but it is NOT neurological!
Wednesday: Allison started with Opthalmology: Allison's vision was STABLE at 20/50 in each eye. Pretty good! Her degree of corneal clouding is also STABLE! While Allison was under on Friday, Dr. Bothun did another eye test to check for Papaladima (SP?) and found no sign of it! Her optic nerves look great, no pressure!
Next she did a CT scan of her sinus. Alli was a trooper and held fairly still during the CT scan. She pretended she was a statue! :D
EKG/Echo/Cardiology ~ Allison's heart walls have DECREASED in thickness again!! When Allison started ERT her heart walls were 9mm in thickness, last year we were at 6mm and this year...5mm YEAH! incredible! I understand that 5mm is in the upper end of "normal" :bounce:
Wednesday night we got to have a little fun! We had a little BBQ with Terri & Jenny Klein and Terri's friend Mike! It was so nice to get a chance to have some down time with another family! :thankyou We had a wonderful time, and loved hanging out with you guys!
Thursday ~ We saw Dr. Schwender for Orthopedics. Allison's spine looks great. Her kyphosis and scoliosis are stable, and very very mild. Dr. Schwender feels like she should not have spine issues in the near future :bounce: On the down side, I thought that Dr Schwender still did hips, BUT he does not! He did recomend a Dr in Minneapolis who does, but that Dr was out of town, so we did not get any help with the questions we have about her hips....
Thursday we were able to meet Erica, Terri & Jenny Klein, and Karen(from Genzyme) for lunch! We ended up staying a couple of hours and making Erica late for her next appointment! :lol: Sorry Erica ~ But it was FUN!
Now Friday is where the Not so good things happen.... We took Allison to the hospital for her sedated tests. The anethesiologist came in, and it was NOT the one that we had requested. I asked him a few questions and was not very confident. We NEEDED to have a Cardiac Anethesiologist, and he was NOT. I called Allison's Cardiologist, and she came down and got a different Anethesiologist ( a cardiac anethesiologist) to work with Allison. We were delayed by the fuss I caused and running late...Oh well..making friends that morning was not high on my list of things to do :roll: I made sure that the new Anethesiologist read the notes from last years intubation and understood that he needed to use fiberoptics and an LMA...I explained all of the issues that Allison has and made sure he understood how careful he must be... I know he thought I was a nut and that I had no business telling him how to handle a patient...BUT I doubt he thinks I am crazy now. Anyway. I went in with Allison and stayed until she was sleeping. I left making sure that they knew to call me in the waiting room AS SOON AS she was intubated. I went to the surgical waiting room and sat....it took 30minutes before a phone call came, I was about going crazy! Then the nurse on the phone told me that they were still trying to get her intubated! They had not been able to secure an airway after a half an hour, but they were still trying. OMG I was so scared! :cry: It took another half an hour after that phone call before they called again to say that they had finally been able to get her intubated! That was HORRIBLE! The tests went fine, and she got new ear tubes. I will hear about the MRI sometime this week.
Allison came out of anesthesia OK, but is wheezing terribly. I know that her throat must be raw, and she is complaining about a sore throat, but it sounds like the wheezing is lower.. Anyone have experience with this? Last year Allison wheezed the day after she was put under for her testing, but not like this. We are using an albuterol inhaler every four hours, but it does not seem to help much. If anyone has some insight on this, I would love to hear it! I plan on taking her to her pediatrician tomorrow morning to make sure there is not something other than irritation and swelling going on...
There is the update folks, now I am going to try to destress for the next week. I am so glad that Allison's annual appointments are done, and I don't have to worry about this again for another year!
Thursday, August 7, 2008 11:29 PM CDT Hi everyone!
Jenn asked me to give a quick update while she’s in Minnesota. I’m actually traveling and my phone reception is really poor but I did manage to get a little bit of information to pass on.
Jenn seemed to be in good spirits. Alli was in a “blah-blah” mood. :) When I asked her how she felt about all the testing she said, "The doctors are annoying." I asked her if she was having any fun at all and she said, “Not really.” LOL…Poor kid.
A bit of good news (or relief for many of us) is that the doctors have decided NOT to do the T&A surgery. They have decided that the risks are far too great and feel that many MPS 1 children are not benefiting enough to take that risk. Personally I was relieved. Allison on the other hand cried because she couldn’t have surgery. When her mom asked her why she was crying she said that now she can't have her popsicles, ice cream and pudding! Graciously Mom has decided that she can still have all her treats despite the cancellation of surgery. (Tee Hee)
So far all of Allison’s tests have either maintained or shown improvement, such as her heart. Since beginning ERT, Allison’s heart has shown yet another year of improvement! Yay!
Please continue to pray for the Restemayer’s. Allison will still be undergoing anesthesia tomorrow for her MRI and Lumbar Puncture. If all goes well they plan to leave Minnesota on Saturday.
Thank you for your continued support,
Jessica Wellman and the Restemayer Family
Updated 8/9/08 - Jenn will probably be home today and will hopefully give more details. Allison was very difficult to intubate, but the doctors did manage. She had an MRI, Lumbar Puncture and new ear tubes placed. When I talked to Jenn last night they were back at their hotel room. Allison was fine (fussy but fine)!
Thank you for your prayers,
Jessica
Monday, August 4, 2008 9:57 AM CDT We are off to Minneapolis for Allison's annual appointments!~
Please say an extra prayer or two for Miss Allison on Friday, she will be going under for multiple tests and having her Tonsils and Adenoids removed. My friend Jessica may update for us while we are gone... Thanks Jess!
Here is the schedule:
Tuesday August 5th
9:00-11:00 AM Dr. Bjoraker
11:00 AM pulmonary function testing
11:30 AM Dr. Philips in pulmonology
1:45 PM Dr. Rimmell in ENT
2:30 PM Dr. Charnas
Wednesday August 6th
7:45 AM Dr. Bothun in Ophthalmology
12:00 Dr Whitley
1:00 PM ECHO followed by Dr. Braunlin at 2:00
Thursday August 7th
10:00 AM Dr. Schwender in orthopedics.
Friday August 8th
OR procedures
Thanks for your thoughts and prayers!
Thursday, July 24, 2008 10:27 AM CDT Good Morning! It has been over 2 months since I have updated this site, and I am sorry for the delay :)
It has been a great summer so far. Ashley was in the Sleepy Hollow Summer Theatre production of "High School Musical" They performed July 8th through July 19th. July 19th was also Ashley's 13th birthday! I can hardly believe that she is a teenager! I will try to post a new picture of her soon, she has grown up so much!
Allison has been busy too! She signed up for Camp Edventure this summer, there were two sessions, and she is in the middle of the second session right now. The focus this year is on Math and Reading with FUN themes! She has been having a great time and loves to go. I do think it is a good program and and she has had great teachers, but at the moment I am a little frustrated. They have been planning an all day field trip for tomorrow. The only problem with that is the place they are choosing to go to is not accessable. They are going to the "BOWL" which is an outdoor stadium that when you walk in, you have to go down a TON of stairs to get down to the feild. There is no elevator. Allison and all of the other kids in the two classrooms that are going, are all getting very excited about going to the Bowl and having their own Olympic games. The problem with that is Allison will not be able to get down all of the stairs to participate. :(
I will be picking her up from the field trip before they head over to the Bowl, and I have a fun afternoon planned for her involving swimming and a special friend, so I hope that she will not feel too bad about not being able to be in her classrooms Olympic games, but this still stinks!
We will be going to the citites for Allison's annual appointments the week of Aug 4. Allison will see every specialist she needs to see between Tuesday and Thursday, then Friday Aug 8th will go under Anethesia for further tests, and to most likely get her tonsils and adenoids removed. We were told to plan on her spending the night at the hospital with her intubated and sedated because of her airway issues. Her airway is about 40% smaller than most children her age, so she is very hard to intubate. The swelling caused by intubation is enough to make her need "blow by" oxygen for a while after any sedation, but when you add in the swelling that will happen after her T&A , there is a lot more risk involved for her. We will also learn more about Allisons hips that week, and most likely find out if she needs to have hip surgery this year. Please keep Allison in your thoughts and prayers that week! I will try to post more about our schedule before we leave.
As always, thank you to everyone that visits this site. We appreciate your support more than you can know.
Love,
The Restemayer Family
Jim, Jenn, Ashley and Allison
Friday, May 2, 2008 9:26 PM CDT International MPS Awareness Day is May 15th, 2008! All of our ND friends will be very happy to hear that our U.S.Senators, Sen. Dorgan and Sen. Conrad both co-sponsored the resolution to make May 15th, 2008 National MPS Awareness Day! Thank you so much for your support!
I am gearing up, so watch out! If you see me between now and May 15th, I just may pin an awareness ribbon on you, or hand you a purple sucker! If you are afraid that you will not see me between now and then, please feel free to call and request an awareness ribbon! We are listed in the phone book! You can also honor MPS children and help raise awareness by wearing PURPLE on May 15th, and letting people know WHY you are wearing purple! www.mpssociety.org is a great place to get more information on all MPS disorders.
Did you know that you can't purchase a bag of suckers that are all one color? SO, last Sunday, I drove around to over 8 different gas stations in town to find purple suckers LOL I ended up with over 100 of them! I'm sure I was quite a sight sitting on the floor in the gas stations going through the box of Tootsie Pops and taking ONLY the purple ones!
My friend Tami made a beautiful slideshow that I know is worth your time to watch...
http://www.youtube.com/watch?v=W7VKAhIWpPM
This slideshow is to help raise awareness for all of our MPS/ML babies. There are many pictures of beautiful children affected with MPS or ML disorders, you MAY even get a glimpse or two of Miss Allison! Thank you Tami for all that you do!
We also have another special day to celebrate in the next week or two! Allison will have infusion number 260 on May 11th (YES, Mother's day) 260 weeks is 5 full years! Ashley and I made a new slideshow in honor of Allison's 5th anniversary on Enzyme Replacement Therapy! Tami put it up in her you tube account, and showed me how to put it on the caringbridge page, SO click on the play button and enjoy some pictures of Miss Allison from the last couple of years!
In Ashley news: Ashley is in the Young Person Ensemble for the Sleepy Hollow Production of High School Musical! They will perform from July 8th through July 19th, 2008! We are so proud!
In Allison news: Allison seems to be doing a bit better from her recent bout with ear and sinus infections, but her hearing is still not back to where it was :( So in other words, if you see my child and say "Hi" be sure to say it LOUDLY! LOL I am kidding, her hearing aides should help her hear you, but if she does not acknowledge that you are talking to her...move closer and make sure she sees you! Any extra prayers would be appreciated for her poor little ears. Hopefully she is done with those nasty sinus and ear infections for this season!
Help Raise Awareness! Wear a purple ribbon, wear a purple wristband, Wear anything purple on Awareness day, and tell people you know about Allison and the other children like her!
Love,
The Restemayer Family
Wednesday, March 26, 2008 10:00 AM CDT I have a special request... Please please say an extra prayer or two for our Caringbridge friend Caroline Vetter. She is in the final stages of a horrible nuerological disorder, and needs our prayers for a peaceful passing. To visit Caroline and her family, go to:
www.caringbridge.org/visit/carolineruby
Allison's infusion went very smoothly this weekend using her other lumen in her port! Thank Goodness! We had to reschedule the appointment with the Radiologist, so I have no news to report as far as his opinion, but I will keep you posted!
Love,
The Restemayers
Tuesday, March 18, 2008 9:35 PM CDT Hi~ I am going to copy and past an email I sent to one of Allison's Dr's instead of retyping the events of today!
Well, We had an interesting day! Allison had an appointment for a dye study this morning at 10am. The Radiologist noticed that Allison has a double lumen port, and wanted to access both lumens even though we had NEVER accessed the lower lumen. We were not aware that she had a double lumen port until about two years ago when we were having trouble and did an x-ray, and at that time decided that it would be too risky to access the lumen that had never been used, we never thought it would work! When we accessed the lower lumen today, we got a blood return right away. The blood was very dark, the nurse described it as "old blood". We withdrew about 3ml's of blood, then the blood coming out was bright red...just like it should be! The dye study was done on both lumens. The lower lumen showed no clots or problems of any kind. The top lumen, the one that we have used for the last 5 years, also showed not clots or anything at the end of the catheter, but was still very hard to flush. The Radiologist noticed a spot where the tubing looks a little bit bent. He thinks there could be just enough of a bend to make the catheter hard to flush.
I hope to get the write up from the Radiologist tomorrow. He recommended that we use the lower lumen for Allison's infusion this weekend. I was extremely nervous to let them access the lower lumen today... I am not sure that I took a breath the whole time they were withdrawing the blood, flushing a bit and injecting the dye. All I could think about was the possibility of an embolism. The Radiologist assured me that he did not see any clots or fibrous things growing from the end of the catheter. He did not see any problems at all except for the little bend in the line that is affecting the top lumen.
So there you have it folks...I will get the official write up from the radiologist tomorrow, and I will let you know what the recomendations are when I get to read them in Black and White!
Saturday, March 15, 2008 7:50 PM CDT Hi! The new picture at the top of this page is of Allison and Ashley wearing their Super "C" t-shirts in support of Caroline Vetter! I have a prayer request: Our Caringbridge friend Caroline (Super "C") is in the end stages of her disorder, please pray for peace and comfort for sweet Caroline and her family as they go through the difficult days that lie ahead. www.caringbridge.org/visit/carolineruby
Well, we are having some trouble of our own here... Allison's port is giving us a very hard time. We have been having trouble with Allison's port for the last few weeks. Four weeks ago, I could not get her port to flush or get a blood return. We ended up going into the clinic and doing her infusion I.V. through her arm, and putting TPA into her port. We left the TPA in for 24 hours, and afterwards I was able to flush her port, but it was still harder than it should have been. For the next two weeks, we were able to do the infusions through her port, but the port was still harder to flush than it should be. Friday, we went into the clinic again for TPA. We left the TPA in for another 24 hours, and this afternoon, it was pulled out and when I started to flush the line, the first 3mls went in easily... then it got very hard to flush again.
I started her out for her infusion tonight with a saline drip at 80mls and hour through her pump to make sure her infusion would go in BEFORE I mixed her meds, and the saline went in fine at 80mls an hour, but when I hooked up her ERT and started infusing that..we ramped up just like ususal, then, when she hit 80mls an hour, the pump beeped and said "DOWN OCCLUSION" so I restarted her pump at 60 mls an hour and she is infusing fine for the moment..
I have a feeling that it is going to be a LONG night, but if we can get this weeks infusion into Allison, then we have a few days to plan what our next step is. I am praying that we can save this port, but I am not sure that it is going to be possible.
Allison is also battling what we think is a nasty sinus infection, I call it nasty because she is SO tired by the end of the day, and is running low grade temps in the evening. She is very stiff and achey...just not 100%.
She got sick almost 2 weeks ago with some sort of virus (temps of 103 degrees) and double ear infections. We started Antibiotics, and the virus seemed to run its course rather quickly. The poor baby just has not recovered fully! We will start our second round of antibiotics tonight and see if we can kick this sinus infection out!
Thank you all for checking on Miss Allison
Love,
The Restemayer Family
Monday, February 4, 2008 10:32 PM CST My children are the greatest gifts I have ever been given. Tomorrow, my baby, Allison turns 7 years old! Happy Birthday Allison! I love you more than you could ever imagine! Earlier this year, I heard a mother talk about her son's Birthday as her "Birthing Day". I like that! So I was teasing Allison that she had to wish me a Happy Birthing Day tomorrow! She thought that was FUNNY!
Allison is very excited about tomorrow, it is her 7th birthday AND it is the 100th day of school. Alli will be bringing in a collection of 100 stickers, and she decided that she had to have 100 chocolate chocolate chip cookies for her Birthday treat! So yesterday morning we made over 100 chocolate chocolate chip cookies, and then started her 246th infusion of Aldurazyme... LONG DAY! She plans on going to Space Aliens for her Birthday supper, and is planning to have a birthday party at the Bowling Alley on Saturday for some of her friends!
Seven Years old..... Seven. Seeing Allison happy and excited over her birthday bring such mixed emotions. I am so proud of the amazing child that she is and the love of life that she has, but I am also so scared.... The photocopy of the PDR that we were given the first day we ever heard those three letters "MPS" said bedridden by 8 and dead by 10. Each Birthday, the number goes up, and I get a little bit more scared. I know that none of us know what our life will become..., but I know that Allison's will not get any easier than it is right now (not that she has it easy) I know that each year will bring more complications... I HATE this disease. I wish I could make everything right for her, I would give anything to be able to do that... Instead, I need to remind myself how amazing my child is, she will continue to beat the odds for a long time to come. That is my prayer. Allison has the strength and courage to help us all down the path that this next year will take us on, whether we are ready or not..
Thursday, December 27, 2007 10:02 PM CST I just have to write down a conversation Allison and I had tonight...I need to be able to look back and remember this!
Allison was in the kitchen coloring with some of her friends/daycare kids, I was in the living room starting to take down the Christmas decorations when I heard her say to Liz, "I just want to be normal!" I stopped and listened. She said again, "I want to be Normal!" I went into the kitchen with my heart in my throat, trying not to cry and asked her what she was talking about. She said, "I want to be normal" I asked "aren't you normal?" still trying not to cry... Allison said, "No, (pause) I am a ROCK STAR, Do you want an autograph?"
Thank God for the wonderful spirit my daughter has!
Monday, December 24, 2007 1:50 PM CST Merry Christmas!!!! The kids are so excited to open presents, I can barely keep them occupied! I hope everyone reading this is having a wonderful holiday!
The picture above is a painting that was done of Allison, and ispart of a nationwide campaign to raise awareness for Lysosomal Storage Disorders. www.expressionofhope.org is the website to see the whole exhibit! If you happen to be in Washington D.C. this exhibit is at the Walter Reed Museum of Health and Medicine until March 2nd. What an honor! My baby has a painting of her on display in Washington D. C. !!
Allison is doing well. We have had a whole month without antibiotics! WOOHOO! Allison started with Nasonex nose spray and that has made a HUGE difference for her sinus and ear infections! She is enjoying first grade, except for the spelling tests... though this week she got 100 n her test! Yeah Alli! Allison picked some new hearing aide molds a few weeks ago, and she just got them back this week. They are clear with PURPLE sparkles! Cute!
There is not much new to report around here. Just the way I like it! LOL
I will put our Christmas card picture on the photo page... enjoy!
Merry Christmas and Happy New Year!
Love,
The Restemayer Family
Sunday, November 25, 2007 8:23 PM CST I hope you all had a wonderful Thanksgiving! I am so thankful for all of you who continue to keep Allison in your prayers and who still check in on us from time to time. Thank you!
Allison is doing well. She had infusion # 236 today. We have had some issues with CONSTANT ear infections! The poor kid has had puss coming out of her ears... We are now on 20 days of Omnicef and ear drops to help her clear this up, but with the constant colds that are going around, it seems like she just starts to get better, and then gets another cold and is stuffy again. Whenever she gets stuffy, her ears get infected immediately! :( We have another appointment with the ENT this week, so we will see how those ears are again then! Wish us luck!
Allison's hips are another issue that has been heavy in our thoughts. Allison saw a pediactric orthopedist in Oct. and in his opinion, Allison should have hip reconstruction on both sides. I am researching options and looking for second opinions, I need to be absolutely sure that this is what she needs and that it will make a difference for her before we put her through this invasive procedure... Please, if you have been through this surgery with your child or yourself, email me and let me know your experience! Please keep us in your prayers on this issue...Pray that we will know what is best for Allison and be able to help her through it!
We did go to CA for Tami's walk/run! It was wonderful, I always love seeing so many MPS families in one place! Ashley was our family photographer for the trip and she took some wonderful pictures...They are in the photo slideshow above, Enjoy! We had a very special thing happen on our way to CA. In the Denver Airport, a couple came up to us to ask if Allison had Hurler Syndrome! That is SO rare...not many people know what Hurler Syndrome is... we of course answered "YES", and this woman told us that she is the mom of a child with Hurler Syndrome! Her son had passed away a number of years ago... I believe that she must have needed an ^^angel^^ moment! I don't think that people meet by coincidence. I know I will remember that meeting.... :)
Love,
Jenn
Monday, September 24, 2007 2:23 PM CDT Long time NO update!
We are all doing well, BUSY BUSY though... School started on Aug 27th this year and Ashley started Jr. High, Allison started 1st grade, and I started working at a different school as an instructional aid! Big changes around here! We are all very tired but loving it!
Alli is slowly adjusting to being in school all day. She is very tired by the end of the day, but handles school well. She still has her one on one aid, and is very comfortable with her new teacher. She has lots of friends in her class, and is currently spending each recess jump roping with a group of girls! Allison's record is 7 jumps in a row! This weekend we have been working on learning to "jump in" when the rope is turning!
We are still doing Allison's infusions on Sundays so that we do not have to miss anything! She had infusion # 227 yesterday! She commented yesterday that she is happy to get her medicine so that she stays healthy... sometimes comments that come out of the blue like that remind me of how lucky we are :)
I did get the written report back from her Neuropsych testing. It was almost fun to read! My favorite part was where Dr. Shapiro wrote that there is NO sign of Cognitive decline!! I knew that ,but it is sure nice to see it in writing!
Ashley has been very busy with Volleyball practice or a Volleyball game each night of the week. She also auditioned for "Simle Singers" and made it, so now she has choir practice 3 mornings a week starting at 7am! Whew busy schedule! She is loving Jr High! She has already been to two dances... am I really old enough to have a child who is in Jr high and doing all the things that go along with that?
We are planning on going to the Buddy Walk on Saturday, September 29th! The Buddy Walk is put on by "Designer Genes" to raise awareness for Down Syndrome and to promote inclusion for all! Wonderful cause! Please come and join us at the State Capitol grounds at 10am for the fun walk!
We will also be making another trip to California for Tami Slawson's Walk/run LA for the National MPS Society! I am SO excited and can hardy wait to go ! This walk/run was the first MPS event we ever went to, and the feeling of family was overwhelming! This truely the most wonderful group of people! They took us in when we were still learning about this disease and the pain of diagnosis was still very sharp. They made us feel like things could be OK at a time when we were not too sure that we would ever be OK again. If you would like more information or would like to make a donation, please go to www.mpsrun.com!
Please remember that with us, no news is good news! Thank you to everyone that still comes to check on us, and I will try to be better about updating, but I am not making any promises LOL !
Love,
The Restemayer's
Saturday, August 11, 2007 9:30 PM CDT Hi Everyone!
This is Jessica Wellman and I’m updating Jenn’s journal. Thank you to everyone who visits this site and offer support to the Restemayer family. This is my first visit to North Dakota and I have enjoyed my stay so much. I will be disappointed leaving the Restemayer’s tomorrow. They have generously opened their home and have been the most gracious hosts.
I was worried about leaving my Indiana home during Kaitlynn’s 3rd anniversary. It was a strange feeling knowing that I would be away from her, or away from her spirit I should say. By leaving I was afraid I would miss even the smallest sign from heaven. I prayed that she would visit me even if I did not stay at home. Little did I know that the Restemayer’s had a pleasant sign waiting for me in their backyard!
Miss Allison, Jenn and Ashley greeted me at the airport at 10:30, August 9th. We arrived at their home before the sun began to wilt Jenn’s moonflowers. I was ushered to the backyard to find…guess how many moonflowers? If you’ve read my journal you would have guessed thirteen, and that answer would be correct! I gave Jenn a very big hug as I watched her beam from the angel moment that had graced her North Dakota backyard.
The thirteen moonflowers faded in the hot sun but were replaced with three beautiful blooms that night. Three flowers for three years spent in heaven. A place where flowers never fade!
The rest of our weekend has been equally as pleasant. After daycare on Thursday we went to the library and Allison got her very own library card! The only guideline was to be six years old and have the ability to sign your name on the back of the card. All of which was a breeze for Miss Allison.
Friday evening we had to go girl S-H-O-P-P-I-N-G!! Wooohooo! We were on a mission. We had to have a wallet that had a “showy-window” (as Allison called it) to carry her very new and shiny library card! We were successful and the pink and black wallet is most assuredly a fashion statement. Saturday…another day of girl shopping, filled with accessories to go with the wallet, such as lip gloss and a new head band.
Saturday night has been infusion night so we’ve spent the evening lounging. I had never seen the infusions done and watched Jenn mix meds and access Alli’s port to fill her body with “get better juice.” I was surprised to see the effects of, not the Aldurazyme, but the Benadryl. She went from happy Alli to Grumpy Alli in about ten minutes. Knowing what my daughter Kaitlynn went through makes four hours of grumpiness a mere speed bump in life’s highway.
Tomorrow we plan to make a movie to take back to “Donald Duck” and then the dreaded goodbyes will follow at the airport. It has been over a year since I saw Allison and I hope that I don’t have to wait as long next time! Perhaps a California walk/run is in store?
Thanks again to the Restemayer’s and to all those visiting, don’t worry about Miss Allison! She’s in the hands of wonderful parents and is one happy, healthy little girl!
Blessings!
Jessica
Saturday, August 4, 2007 9:00 AM CDT We are Home! We arrived in Bismarck Wednesday evening. As we took our exit and drove into town, we heard the news about the Minneapolis Bridge Collapse. We were shocked! The 35W bridge is just blocks away from where we were! Very Close to U of M and Fairview. Many prayers for all those affected by this tragedy!
Allison did very well while we were in the cities. She is such a trooper! Every year we put her through a torturous few days of testing and non-stop Dr visits, and she handles it all so well. We started with developmental testing on Monday Morning. We were able to discus preliminary results with Dr. Shapiro and I am very happy to say that Allison is right on track! Dr Shapiro feels that the Corneal Clouding Allison has IS affecting her visual acuity, so we will need to talk to the school about high contrast and large print materials, but we have been SO lucky with the services Allison receives at school and have not had any trouble getting what Allison needs that I know the school will help get Allison the high contrast and large print materials that she needs.
Last year Allison did not score as well on the developmental testing, and the Dr's were worried that she was starting to decline mentally. Dr Shapiro is reassured that Allison continues to do very well cognatively!!! She feels that most likely the test scores last year were down because of Allison's visual acuity. This is an area that Dr. Shapiro has really been studying in the last year. I can't tell you how wonderful it was to hear such a positive report on her developmental status! Dr. Shapiro even called Miss Allison a PHENOMENON!
Next we saw Cardiology. Allison has a 1st degree AV Block which as gotten slightly worse in the last year, but still not bad enough to require any medication. We also did an echo and measured the thickness in her heart walls. This year the heart wall measures at 6mm !! It is down from 7mm last year! WOOHOO! This is cool! Since Allison started her infusions of Aldurazyme, the thickness in her heart walls has now gone from 9mm to 6mm! Awesome!
Off to the eye Dr... Allison's vision is fairly good, they estimate a 20/40 to 20/50 in each eye. Her Corneal Clouding is moderate but holding stable which is wonderful.
There were NO signs of papaladema (sp?) which is pressure on the optic nerves caused by hydrocephalus. Wonderful news!
Allison went under anesthesia for and MRI, LP, EMG, CT scan, and eye exam. The intubation went fine, but the anethesiologist noticed that ALlison's vocal chords and asophagus were very red, irritated and inflamed. He feels that Allison has chronic reflux. OK... new issue, but easily treatable ! Alli was under for over 3 hours! From the preliminary results, the EMG which is the nerve conduction test that will tell us if Carpal Tunnel has returned, was a little better than last year! This means that she does not have Carpal tunnel again, and that the surgery that she had for Carpal Tunnel is still helping her 3 years later! The MRI and CT Scan look unchanged from last year! The Lumbar Puncture opening pressure was high again, which is not good and could be a sign of Hydrocephalus, but her pressure was lower than last year.. again we will watch her very closely for any other signs of Hydro..
Tuesday night ALlison started coughing and wheezing a bit. Jim and thought it was probably from being sedated with a tube down her throat, and her throat being so irritated earlier that day... We had an appointment with Pulmonology the next morning, so we had the Pulmonologist take a listen to her chest. He decided to give her albuterol in an inhaler. He had her take THREE puffs of Albuterol from the inhaler! OMG! Any of you who have had to take albuterol or have given it to your child know the effects.. Did I mention that we drove home after our last appointment that morning? Allison was bouncing off the walls, and that is putting it very nicely! We had a 7 hour drive with a child on albuterol...
Anyway, overall the appointments went really well. Thank God! I am happy to be home, and happy that we are done with our most stressful week of the year. Thank you for all of your thoughts and prayers this week! I will let you know more as we get the written results~!
Love,
Jenn
Tuesday, July 31, 2007 3:40 PM CDT Hi.... This is Tami updating for Miss Allison.
Jenn called and said Allison is doing well. She came through surgery fine and intabated wonderfully. She is back at the hotel resting and watching movies.
Please keep them all in your prayers that all tests come back wonderful and they have a safe trip home.
Jenn will update more when they get home!
Friday, July 27, 2007 10:13 AM CDT Well, it is that time of the year again....We are off to Minneapolis this Sunday to go for Allison's annual appointments. Please say an extra prayer or two for Allison to be safe while she is under anesthesia on Tuesday. This is always a concern for her because of her airway issues and because of her heart. Allison has a 1st degree AV Block in her heart, and the stress of anesthesia could cause major problems.
Ashley turned 12 years old on July 19th!! Happy Birthday Ashley! She had a sleepover with 4 of her friends to celebrate. They had a great time despite the 105 degree temps outside! We took them all to the Movie "Hairspray" and they loved it!
Thank you all for checking on Allison and our family. I will update when I can.
Here is Allison's tentative schedule:
Monday, July 30th ~
9:00 am Neuropsychological testing ~ Dr Shapiro
2:00 pm echo
2:40 pm Cardiology ~ Dr. Braunlin
4:00 pm Ophthalmology ~ Dr. Bothun
Tuesday, July 31st ~
Under Anesthesia for testing... LP, MRI(I have requested full body MRI), and CT scan
3:15 pm Genetics ~ Dr. Whitley
Wednesday, August 1st ~
8:00 am Pulmonary Function Test
8:30 am Pulmonology Dr. Phillips
9:30 am Neurology ~ Dr. Charnas
Thursday, June 21, 2007 10:40 PM CDT 
SUMMERTIME! When my kids look back and think about summertime, I hope they think of long hot days outside, swimming, popsicles, and playing with friends. I hope they remember the anticipation of getting into a pool on a 90 degree day, or how COLD the water comming out of the sprinkler can be...
Sorry for the lack of updates, but we have been busy enjoying SUMMER!
Allison started clinical therapies a few weeks ago. She is getting Occupational Therapy on Monday evenings, Hydro Therapy AND Physical Therapy on Wednesday evenings. We had new hand splints made for her to wear at night. Hopefully they will help stretch out her little fingers and give her a little more Range of Motion in her hands. :) Alli LOVES the Hydro Therapy! She says the pool is like a big Hot Tub! I really think the water feels so good on her stiff little joints. I am hopeful that our busy therapy schedule will help Allison get some of the Range of Motion back that she lost this past year. Please keep her in your prayers!
Allison also started Camp Edventure~ She is in this summer school program for a total of three weeks. Ashley decided that she is too cool to go to camp edventure this year... She has gone EVERY year since Kindergarten until now LOL! Allison went on an ALL DAY field trip yesterday! She was gone from 8am to 4pm! The kids all went to see a play put on by a local summer theatre program and then they all went to Fort Lincoln State Park for the rest of the afternoon. Allison had a great time!
I hope you are all outside enjoying time with your friends and family, and making many summertime memories!
Thank you for checking on our family!
Love,
The Restemayers
Wednesday, May 30, 2007 11:25 AM CDT We are back from Washington D. C.! I hope you enjoy the pictures, we had a wonderful time!
***FOR IMMEDIATE RELEASE***
Local Advocates Take Kids’ Health Messages to DC
Washington, DC – Donene Feist, Edgeley; Roxanne Romanick, Jennifer Restemayer, Carlotta McCleary Bismarck; Twyla Bohl Knox; and Missi Baranko of Dickinson joined over 200 family and youth leaders, professionals and national and state policymakers to share information and strategies for improving health care for children and youth with special health care needs. They attended the Family Voices 15th Anniversary National Conference, “Moving Forward the Future of Health Care for Children and Youth: Families, Partners and Communities”, May 24-26, 2007 at the Grand Hyatt Washington DC. Family Voices is a well-known national grassroots network that helps families and youth advocate for improved health care systems and policies.
C. Everett Koop, MD, former Surgeon General of the United States, Merle McPherson, MD, former Director of the federal Division of Services for Children with Special Health Care Needs, and Thomas J. Tauke, Verizon Executive Vice President and former Congressman from Iowa, were honored for their long-term contributions to children and youth with special health care needs at Family Voices’ 15th Anniversary Gala, was held May 23 prior to the conference. Donene Feist had the opportunity to meet C. Everett Koop, MD, which was a huge privilege.
The group met with Senators Dorgan and Conrad on this trip to discuss future issues for children with special health care needs. Throughout the conference North Dakota was mentioned many times because of the work on the Medicaid Buy-In program, hats off to all of you and your hard work.
Donene Feist was also provided an award by Diana Denboba from Peter Van Dyke, Associate Administrator of the federal Maternal and Child Health Bureau for her role in assisting the Bureau by enhancing the data collection and analysis capacity of the Family to Family Health Information Centers across the country and the Family Voices National organization.
Family Voices, a national nonprofit organization, advocates for family-centered health care for all children and youth with special health care needs, promotes inclusion of families as decision makers, and supports partnerships between families and professionals. With Family Voices organizations in most states and territories, Family Voices has developed a unified voice addressing shortcomings in health care systems and service delivery for children and youth. Family Voices’ family and youth leaders are specialists advocacy on behalf of children living with chronic health care needs. Family Voices has a legacy of involvement and advocacy in national public policy discussions to assure appropriate health care for all children.
Also, while in D.C. the announcement was made that HRSA Awarded $2.9 Million for Family-to-Family Health Information Centers. The Health Resources and Services Administration has announced 30 grants worth $2.9 million to support new and continued Family-to-Family Health Information Centers for parents of children and youth with special health care needs. Twenty-four new and six continuing statewide centers will each receive grants of $95,700 beginning June 1, 2007. “The centers help parents access information about health care, community resources, support services and technical assistance that they can use to make informed decisions regarding their children’s care,” said HRSA Administrator Elizabeth M. Duke. “We are very pleased said Family Voices of North Dakota Director Donene Feist to be one of the recipients”
Sunday, May 13, 2007 9:12 AM CDT Happy International MPS Awareness Day ! (May 15th, 2007)
Please take a moment today to honor all of the children who struggle with an MPS/ML disorder, and to remember all of the children who are now angels.
Today is a day to Celebrate! Four years ago (208 weeks) Allison recieved her FIRST infusion of Aldurazyme. I remember being So excited, nervous, hopeful and terrified as we went to the clinic for her first infusion. Here is the post I made after her infusion:
Wednesday, May 28, 2003 10:45 PM CDT
ALLISON HAS HER ENZYME!!!!!!!! I am so excited! I can hardly believe it. Today was awesome. We arrived on the pediatric floor of the clinic at noon and were immediately escorted into a conference room filled with medical professionals. I felt so out of place :) Here I am with a BIG backpack filled with puzzles & books, a diaper bag filled with snacks, juice,& diapers, pushing a big stroller with my 2 yr old in it who just sang the "I love you" Barney song VERY loudly as we came down the hall! LOL Not to mention that I had spent the morning running around like a chicken with my head cut off trying to get everything ready, keep my daycare kids from beating on each other AND trying to get a urine specimen from an uncooperative two year old! I'm sure I looked VERY frazzled!
There was a presentation on MPS 1 and on the results of the clinical trials for Aldurazyme. It was amazing to have people with such knowledge about MPS telling us about the possible reactions and how soon we could see progress! Most of the pictures they showed were of older children whose disease had progressed a lot more than Alli, so it was a little hard for me to know that without treatment...Allison could be in the same position as she got older. I know the reality of MPS, but it still hits really hard to see how devestating this can be.
The hardest part for Alli was as the nurses got ready to access her port. She was scared as soon as the nurses brought us into an exam room. She cried while they gave her the pre-meds (Tylenol and Benedryl) and when they put the needle in the port. She ended up pretty much screaming herself to sleep, with the help of the Benedryl they gave her through the port. She was asleep by 1pm. There was a nurse in her room ALL DAY! ONE on ONE! WOW! Alli's vitals were taken every 15 minutes all day. The Aldurazyme started at 1:30pm. YEAH!!! I think the actual event was non-climatic for everyone else but me! I kept thinking..this enzyme that she is missing ..the one whose absence results in such damage..is running into her body!
Allison slept until 4pm! Benedryl is good! When she woke up she was very happy. She ate some snacks, put together her puzzles and watched a "Barney" video. We finished the infusion at 5:45pm and were home by 6!
Every Wednesday at 8am...we will be at Medcenter One. I'm sure Allison will just learn to accept this into our "normal" routine. Thank you all so much for your prayers and good thoughts! ERT is so new, I know we all still have a lot to learn about its effects over time. We have HOPE!
Now, Allison's infusions are very routine for her! She is getting her infusions on Sundays, and I am her nurse :) I am SO thankful that Allison is able to get ERT, and that she is doing so well! WOW ! We will have her 208th infusion TODAY! YEAH ALLI!
May 15th (Tuesday) is the first Iternational MPS Awareness Day! We will be sending purple suckers and Awareness ribbons to school with the girls and trying to help raise awareness for all of the MPS/ML disorders! Please take a look at the Awareness E-card!
http://www.jointhesearch.org/cards/ViewCard5.aspx?Rid=727
Happy Mothers Day to all of you! This poem is a favorite of mine, I hope you enjoy it too!
To You, My Sisters
by Maureen K. Higgins
Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores.
I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters."
Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.
We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.
All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.
We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's . We have mutual respect and empathy for all the women who walk in our shoes.
We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and psychology.
We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis. We have learned to deal with the rest of the world, even if that means walking away from it.
We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us on line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.
We have our own personal copies of Emily Perl Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother". We keep them by our bedside and read and reread them during our toughest hours. We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family. We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it.
We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.
But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs.
We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.
But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.
Thursday, April 19, 2007 3:07 PM CDT Tuesday at 11:00am Governor Hoeven signed the Medicaid Buy-In, making North Dakota the FIRST state in the Nation to adopt the Family Opportunity Act! HUGE NEWS! Here is a link to one of the news videos from the press conference:
http://www.kxmb.com/video.asp?ArticleId=115131&VideoId=6910
Allison and I went to the Press Conference, it was wonderful! The room was filled with all of the people who worked so hard to see this happen. As a mother with a special needs child, I can't tell you how lucky I am to have such wonderful advocates working to help families like mine in our state. From parents who shared their stories, parent advocates, Family Voices,Protection and Advocacy, The ARC, all the way up to the Legislators who supported and sponsered this bill, I thank you.
The slideshow above is pictures that were taken at the press conference! Enjoy!
Love,
Jennifer
Friday, March 30, 2007 11:08 AM CDT There are many people who have been working very hard in ND to get our state to adopt the Family Opportunity Act!
ND calls it the Medicaid Buy In: SB 2326, The Medicaid Buy-In was PASSED by the State House yesterday afternoon, and now all that is left is for it to be signed by the Governor!!!
The Medicaid Buy in would be a program to allow families that have a child with a disability to buy into Medicaid coverage. There are income guidelines, Families can be up to 200f the Federal Poverty Level ( net income) after deductions. Families that qualify would be able to pay a small monthy premium to have medicaid coverage. Most families will use Medicaid as a secondary payer.
As an ammedment for this bill, funding for a Medicaid waiver for Medically fragile kids was added! I testified for the state Legislature two years ago in favor of this waiver, and the waiver passed, but NO money was put behind it.
We have been woking really hard to get the ND State Legislature to understand that most insurance policies employers offer are not comprhensive enough for children with disabilities. We need some help! In my testimony, I let them know the cost of ERT, and that Allison could hit her lifetime Max of $2,000,000 before she is 10 years old! When Allison hits her lifetime Max, we will NEED either the Buy In or the Medically Fragile waiver.
I can't tell you how happy I am that this peice of legislation has passed. It is such a releif to know that when Allison hits her lifetime max for her insurance policy, we will have some options.
Allison is doing well, She has battled with a pnuemonia type illness for the last week, but her fevers went down fast and nebulizer breathing treatments really have helped her. We are still on antibiotics, and we are still doing nebulizer treatments, but they are down to twice a day instead of every 4 hours! We are on the mend!
Thank you for checking on our family, and a HUGE thank you to all of the advocates and families for your help on getting SB 2326 passed, our voices really do make a difference!
Love,
Jenn
Sunday, March 18, 2007 3:40 PM CDT Happy 200th Infusion Allison!!!!
Allison is now finished with her 200th infusion, and everything went well! I can hardly believe that she has had 200! WOW that is crazy! We are so thankful that Allison is able to get her infusions and are so grateful that she is doing so well!
I have put up a few pictures that a friend sent me of the Disabilities Awareness Day up at the State Capitol Building! Check out the photo page. There were two state Senators that read stories to the kids, it was great!
We are off to Space Aliens for supper tonight to continue our celebration! Thank you for checking on my baby!
Tuesday, March 13, 2007 10:23 AM CDT A MESSAGE FROM FAMILY VOICES OF ND
- March 14th (Wednesday)....Join us for Disability Awareness Day at the Capitol sponsored by the North Dakota Disability Advocacy Consortium. Many organizations from across the state will be setting up booths etc. Family Voices of ND is a part of the consortium and we will be taking part, with the help of other family org.
We hope you will bring your child with for this day. It will be in the Great Hall of the Capitol starting at 10-3p.m. At 11:30 a.m. is Story Hour, we will have 2 of the Senators reading a children's book on the importance of inclusion for all..... to the children attending. We are hoping there will be one or 2 classrooms from Bismarck there as well as hoping others will be bringing their children as well. For the older children we will have an community forum of sorts with the Senators.
Bring your child/children.. each of them will get a treat. If you plan to come we encourage you to contact your local Senator and Representative to let them know you will be coming, so you can visit with them as well. Other Senators and Representatives will be involved as well and are volunteering each day.
Soup will be available for those attending
We will be attending, and I hope to post a few pictures after the events!
Wednesday, February 14, 2007 11:09 AM CST Happy Valentines Day!!! The new slideshow above is all pictures from Saturday, Feb 10th! Allison had her Birthday party with 7 friends and her sister, Ashley, at Space Aliens! They all had a great time, ate lots of pizza, and played a ton of games! After the Birthday party, Allison went to "Homerun Heros". Homerun Heros is put on by the University of Mary's Physical Therapy Dept. It was so much fun! Alli knew a few of the kids there, and each child was assigned a "buddy" to help them play tee-ball. Allison's buddy was Cari. Cari's brother Matt is an MPS II angel! We have met Cari and Matt's Dad a couple of times, and were so excited to meet Cari! She is a sweetheart! Allison really really liked her, and had a great time! Thank you Cari!
Well, these last two weeks have been interesting! Monday, Feb 5th, Allison's birthday, she got a virus :( Poor baby! Tuesday Morning we were all supposed to head to Crookston for my Grandma's Funeral, but I was the only one that got to go because Alli was sick. Alli, Ashley and Jim stayed home. Ashley got to go to school, but Jim and Alli were pretty much confined to the house.
I have been up at the capitol a few times lately to testify in favor of SB 2326, a Medicaid Buy-In for families who have children with disabilities. The Buy-In would really help a lot of families in ND who are currently not receiving any state services, but make too much to qualify for Medicaid. Yesterday, SB 2326 passed unanimously through the State Senate!!!! We still need to get it through the house, but we are half way there!!!!
Thank you so much for checking on our family!
Love,
Jenn
Saturday, February 3, 2007 1:21 PM CST Allison will be 6 years old on Monday Feb 5th!! I can hardly believe it! She is so excited about her Birthday AND her birthday party that it is all we hear about! Allison has already had a busy week with Birthdays... Her friend Abby and her friend Hannah both had Birthday parties yesterday, so Allison was at TWO parties in one day! She had a great time!
Our week has been an emotional one. My Grandma Myrold is not doing very well. The Dr's think it is just a matter of time. We are praying for her to be filled with peace, no pain.
**Update ~ My Grandma passed away at 3:57pm Saturday Feb. 3rd
Thank you all so much for checking on our family, it means so much to us!
Love,
The Restemayers
Thursday, January 11, 2007 1:10 PM CST Happy New Year! Allison is having some trouble with her port again....We have not had any trouble with it since this time last year, so please say a little prayer that we can get the clots cleared out of the port and make this port last longer! Allison has had her port for almost 4 years, and has had 191 infusions with it. The average lifespan of a port is 3 years from what I have been told. I hope and pray that Allison's port makes it for a LONG time, and we do not have to do surgery to replace it anytime soon.
Allison is also battling a bit of a cold right now. Two of our daycare kids have had Croup this week, so I hope that Allison's cold does not develop into Croup!
Allison is doing very well in school! Today she was the helper of the day, and that is always so exciting for her! She loves spending time with her classmates and friends.
This weekend, we will be going to Grand Forks to celebrate Christmas with Jim's side of the family, we will also hit Crookston and Moorhead for my Dad's side of the family! The kids are so excited! I sure hope it warms up a little before we go, but it does not look like we will get warmer weather for our trip...It is 2 degrees here right now with wind chills around -20. FREEZING! We are longing for summertime! We want to be warm!
Thank you for checking on my baby!
Love,
Jenn
Sunday, December 24, 2006 8:43 PM CST Merry Christmas! The presents are open, and there is wrapping paper ALL over my floor! The kids are getting ready for bed and have put cookies and milk out for SANTA, and reindeer food out on the lawn so that the reindeer get a treat too... The girls had a great time opening presents, and as usual, they got TOO much ;) I enjoyed taking the girls to church this afternoon, and not having to remind either one of them to sit still more than once or twice LOL They must be getting older! This week has been very busy getting ready for Christmas! Allison had her infusion yesterday, just because we thought that there is NO part of Christmas that should be medical for a 5 year old girl. She has been running a low grade temp for 2 days, but is already on an antibiotic for her ear infections. I hope that nothing else develops!
Friday, December 22nd was Jim's Birthday!!! Happy Birthday! We love you! I hope you had a great day!
Last week, the girls and I went to Osseo, WI. We drove 8 hours!!!! My little sister, Jessica has earned her Masters degree and we went to help her celebrate. The above picture is a 4 generation picture! My Uncle Jeff, Aunt Cathy, my mom, my Nana, my dad Will, me, Ashley, Allison and Jessica are all pictured. It was quite a weekend, and I think we all had a great time getting together.
My Dad, Chris, had surgery last week. He has been diagnosed with Prostate Cancer, and our hope was that the Dr's would be able to get all of the cancer with surgery. Unfortunately, they were not able to get all of the cancer. We are not sure yet what the next step will be, but think it will be radiation. Please say a little prayer for my dad that the radiation does the trick!
Thank you for checking on all of us, and again...
Merry Christmas! God Bless
The Restemayers
Tuesday, November 28, 2006 9:21 AM CST We took pictures this weekend to try to get a good Christmas card photo! What a CHORE that was!!!! The girls were yelling at each other the majority of the time! Ashley would try to get Allison to move over, Allison would say, " Ashley is trying to push me out of the picture!!" "I won't be in this one!" GOOD GRIEF! It was one of those days, but I think we got some good pictures!
Thanksgiving was fun. My sister, Jessica, came to celebrate with us. It was great to see her, and the girls enjoyed the time with their Aunt!
This Sunday will be 185 infusions for Miss Allison! ERT is such a gift! I must be getting a little sentimental, there are a few people with MPS II that are receiving ERT now. Most of these kids have had only a handful of infusions and are starting to see some improvements! It makes me think of the wonderful changes we saw in ALlison when she started her infusions. :) We don't see changes in Allison anymore, but that means that the ERT is still doing it's job, and Allison is not deteriorating! ERT has dramatically slowed the progression of Hurler Syndrome... Allison is doing very well in Kindergarten this year, and it seems that she has made friends at school! She has grown a tiny bit. She is now up to 39 1/2 inches tall! She continues with her Therapies, and is doing well with them.
Ashley is growing up...She bought herself a curling iron this weekend, and has used it just about everyday. She has only burned herself one time :) Her poor hair has been curled with in spirals EVERYDAY since she bought the curling iron! She does not like it when I try to help her, or give her any tips on how to use the curling iron. I am SO not ready for Juniour High next year sigh....
Thank you for checking!
The Restemayer Family
Friday, November 10, 2006 9:55 AM CST Good Morning! Allison had her 181st infusion last Sunday and everything is continuing to go well! She is enjoying Kindergarten. We had Conferences for both girls this week, and it sounds like they are both doing very well! Allison has been wanting to learn how to spell. She learned to spell her last name ( Restemayer) and last week she wanted to know how to spell Bismarck! She is very eager to learn and that is WONDERFUL!
Halloween was fun! Allison was Stephanie from "Lazy Town" and Ashley was a Pink Lady from the movie "Grease" They had a great time trick or treating and we have TONS of candy sitting around our house (just what I need! LOL)
Please continue to pray for all of our babies, and as always, Thank you for checking on us!
Love,
The Restemayer Family
Wednesday, October 4, 2006 10:29 AM CDT Hi ~
We had another busy week around here! Allison got her hearing aides... We are still adjusting to them. She likes that she can hear better, but they are uncomfortable for her. I hope soon we can get past the tears in the morning when it is time to put them in! We are searching for a hearing aid kid clip that is PINK and that works for Allison. It has been hard to find one that does not have a big farm animal or sea creature on the clip, and that does not have an alligator clip that will poke her in the back of the neck.... I will keep looking!
On Saturday morning, we went to the 3rd annual Buddy Walk put on by Designer Genes, an organization to raise awareness for Down Syndrome! It was wonderful! There were over 300 people there! We walked for our friends Elizabeth, Christian, and Sarah! Ashley had a Basketball game (they did not win :() and met us there after her game. After the Buddy Walk, Allison had been invited to a birthday party at Snoopers Tons of Fun! Then we headed out to the Pumpkin Patch for the Buddy Walk's after party! Allison got to ride a pony, and Ashley headed straight for the hay maze. We had a great day! As we were getting ready to go home, Ashley got stung by a BEE! Poor kid, her had swelled up, and it HURT! Benedryl helped with the swelling, but Ashley just rested for the rest of the evening.
We had our Eligability meeting yesterday morning, and I am sorry to report that Allison was Denied services once again. This time, we will do a formal appeal and see where it leads. I sure wish we could get Medicaid for Miss Allison!
Thanks for checking!
Love,
Jennifer
Wednesday, September 20, 2006 10:08 AM CDT Hi!
I thought I better fill everyone in before you all give up on me and stop checking! We have had a very busy month. Allison had her annual appointments in Minneapolis in August. Most of her appointments went fairly well. There are always issues that pop up though. Allison's developmental testing did not go very well this year. :(
She scored considerably lower. I know the Dr.'s in Minnesota beleive that Allison is starting to regress, but I honestly do not see it. I do not feel she has regressed at all. I have to trust my gut on this one! It has been really hard to recoup after our trip to MN, but then again it usually is.
Allison started Kindergarten this fall! She seems to enjoy it, but is TIRED after school! The picture above is of Ashley and Allison on the first day of school! Ashley is in 6th grade now, and the Basketball season has already begun! They had their first game last Saturday. The team looked great for the first half of the game, but petered out for the second half LOL! Ashley did make a basket!YEAH Ash!
Allison will be getting Hearing Aides. The constant ear infections have taken too much of a toll on the nerves in her ears and she is now hearing at about 45 decibals. :( She got to choose the color of the ear piece! She chose clear with PINK sparkles! I hope she likes wearing them, I know she will feel better if she does not have to concentrate so hard to hear!
I have been busy too! I have applied for DD services for Allison (AGAIN) I really hope she gets them this time! We could sure use Medicaid again! She has been without services since she turned three. I also testified at the Capitol for the Legislative Committee for the Study that was passed to identify the "Gaps" in our system for children with Special Health Care Needs. I can only hope that it makes a difference!
I am pretty sure that I need a vacation!!! I am hoping for some "down time" soon!
Thanks for checking!
Wednesday, August 30, 2006 2:12 PM CDT Hi All! This is Alli's Nana all the way from Mississippi! A long journey begins with the first step and in our case...the first mile! John and I are traveling by car from Mississippi first to Chicago to see my brother Jeff and Cathy get married, then to Wis. to visit Jessica with a stop in Fargo and now we are here in Bismarck to visit Alli, Ashley, Jenn and Jim. I marvel at how wonderful it is to have family activities to attend and how much we all enjoy each other. Alli went out to lunch with John and I today and it was a delight to listen to her chatter on about school! Telling me all about how she is 5 and can do all these things!! Kindergarden is a hit with Alli and she "learns so much" each day. What a cutie and she has told me about Kentucky and all the new friends she made there. Memories for Alli to share and does she talk and talk about their trip to Kentucky. I forget how life seems to a 5 year old but Alli is quickly filling me in!!
Janelle (Alli's Nana)
Thursday, August 10, 2006 10:43 PM CDT Our family was very fortunate to attend the National MPS Society's Annual Conference in Covington, KY! We spent July 27th-July 30th with other families affected by MPS and ML! We met so many new faces, a lot of them I have "met" on the internet and through www.mpsforum.com . My children were treated like royalty, and everywhere we looked there was another smiling face. We are so blessed to have all of these wonderful families to share this MPS/ML journey with us. The support from all of them is a big part of what gets us through! Thank you!
We hardly saw Ashley while we were in Ky! She found Sammie Slawson right away, and was introduced to all of the gang. She spent every free minute with this big bunch of wonderful kids! They swam and "hung out" in each others rooms. Ashley was out until 11pm or later every night! ( Many parents checked on this group often...so they were somewhat supervised!)
Allison was surrounded by fans from the moment we walked into the hotel! She was a princess while we were there! She had so many pictures taken of her that she developed a "super model" pose and as Donald would say... a "SUPER DUPER" model pose! LOL Allison especially enjoyed seeing her friends Jessica and Brian Wellman again. Brian can make her giggle SO hard! I'm pretty sure Allison would have gone home with the Wellman Family if I would have let her! Thank you to the WHOLE Wellman Family( Jess, Brian, Josh, Holly, Aunt Rhonda , George, Becca, Levi, Hunter, & Josie) for making Allison feel so special!
One request!!! My camera battery died while we were at the conference! If anyone has pictures of the group of girls from the conference, please send them to me! I did not get ANY!!!! Thank you to Kim Frye for sending me the picture of Allison and I that is at the top of this page!
Our Family will be leaving this weekend for Allison's annual Appointments in Minneapolis. Allison has her first appointment at 9am Monday, August 14th. She will have appointments all day Monday and Tuesday, and then on Wednesday, August 16th she will be put under for her MRI, LP, CT, EMG, and new ear tubes. Please keep our whole family, especially Allison in your prayers as we start the most stressful week of the year.... I will update when I can!
Thank you for checking on us!
Love,
The Restemayer's
Sunday, July 16, 2006 3:52 PM CDT ***** HAPPY BIRTHDAY ASHLEY!!!! JULY 19TH IS ASHLEY'S 11TH BIRTHDAY!!!! I HOPE YOU HAVE THE BEST DAY EVER! I LOVE YOU!*****
Long Time NO update! Sorry! We are doing Allison's infusion right now, and it is going very well. Her Port has been working well. (knock on wood!) We are STILL battling with her ears though. She has not been hearing well at ALL for the last two or three weeks because both of her ear tubes are clogged and there is a ton of fluid behind them :( We have been trying every type of ear drop we can think of to get these stubborn tubes unclogged. We will be going to Fairview the week of August 14th for her annual appointments, and we will be replacing the ear tubes then. Meanwhile, she is very very frustrated because she is not hearing well. I think we are all very frustrated! The volume on everything has to be extrememly loud for her to be able to hear it. She can't hear well enough to talk on the phone :( she LOVES to talk on the phone, so she has a meltdown every time it rings and she can't talk! Poor Kid!
We will be heading to Covington, KY on July 27th for the National MPS Society's 21st annual conference!!!! I am so excited! It will be our first conference! We have met MPS families before, but this will be up to 300 families in ONE place at one time!!!!! Please keep us in your prayers for a safe trip, AND that Allison's ears can unclog and drain BEFORE we get on that plane!
We have been busy swimming! It has been really HOT here lately (It is 105 degrees right now!) so we have hit the wave pool, and we HAD to get a bigger backyard pool. I found an 8 foot round pool that is 2 1/2 to 3 ft deep. It works great! I will try to come back and post pictures later today!
I hope everyone is doing well, and I will try to do better with the updates! I promise!
Love,
The Restemayers
Sunday, June 11, 2006 3:33 PM CDT Hi ~ The picture above is one of my favorite pictures of Jim and Allison! It was taken in the fall of 2002, and Alli was about 18 months old. I thought it would be a good time to put it up, with Father's Day being next weekend!
I hope everyone is having a wonderful weekend! We are in the middle of Allison's infusion rigt now, and everything is going well. She is sitting on the couch with a bowl of goldfish and a cup of juice, watching "The Lizzie Mcguire Movie" LOL It must be rough! She did sleep for over an hour today, so I hope that she will be in a good mood the rest of the day.
Alli has been having trouble with her sinuses this month. She is now on her third round of antibiotics! I hope they clear up soon! We have had a very very busy first couple of weeks of summer. We have had around 10 daycare kids each day, and most of the are 4years old or older. We have taken many long walks, and gone to every park that we can walk to! Just trying to keep them busy! Allison has been very tired by the end of each day. She was still taking naps everyday until summer started, but now there are not many kids here that take naps, so Allison thinks she should stop too. I think she is starting to adjust, but some days, we can REALLY tell that she did not take her nap!
I finally finished Allison's baby book this morning! It is so hard to know where to stop! I have pictures in there up to her very first infusion! She was 2 years old. It is hard to go through it and see that there is a Before diagnosis, and an after.... It is really obvious to me, but that may just be a mental thing for me. Allison being diagnosed with MPS was a huge change in our lives.... nothing was ever the same afterward.
I hope everyone has a wonderful Father's Day! Thanks for checking!
Tuesday, May 16, 2006 12:58 AM CDT No, It is not anyones Birthday...BUT we are celebrating! Allison had her 156th infusion this weekend!!!! WOOHOO! 3 years on ERT! Thank you to EVERYONE who had a hand in getting ERT approved for our kids! Allison has been lucky enough to have ERT since she was 2 years old! What a difference it has made for her. We are so lucky that she was able to get it at such a young age!
After Allison's 156th infusion, we went to Target to find her an anniversary present, and the to Space Aliens for supper to celebrate! I think she had a pretty good day :)
Allison only has 6 days left of pre-school! She will be sad when this school year is over, but I think she is excited about going to Kindergarten.... I am very nervous about it, but I am sure she will do fine.
Ashley got her cast off this morning and is now sproting a brace on her arm. She was very happy that they did not re-cast her! She will go back in to see the Dr. in two weeks to make sure her arm is still OK. I told Ashley that she needs to be VERY careful with her arm for the next couple of weeks so she does not re break it! We were told that quite a few kids with this type of break will rebreak it in the first month out of the cast! That would be AWFUL!
Thank you for checking on my girl!
Love,
Jennifer, Jim, Ashley & Allison
Monday, April 24, 2006 9:07 PM CDT Hi! Allison is doing well. I took both of the girls into the clinic on Wednesday evening, and they both have a sinus infection. They started on Augmentin. Augmentin has such an awful affect of Allison's stomach....poor kid! We are loading her up on Acidophelis to try to help!
Ashley bought herself a new pair of Rollerblades on Saturday morning. She practiced for a couple of hours that afternoon and then called Allison and I over to see how good she was getting. She lost her balance and fell on her arm! Ashley fractured her left arm, just above her wrist. :( The Dr. could not cast it on Saturday, he had to refer us to the Bone clinic because Ashley was too swollen to put the cast on... We went into the Bone clinic today, Ashley chose a lime green cast. I will try to take a picture this week and get it put up so you can see!
We are counting down to Allison's 3 year anniversary on Aldurazyme!!! I can hardly believe it! 4 more infusions and she will have had 156! Three full years! Thanks for checking!
Love,
Jennifer, Jim, Ashley and ALLISON
Tuesday, April 11, 2006 10:01 AM CDT Well! We finally have a resolution to the bus incidents. There has been a Transportation Policy revision! The revision to the policy was approved by the Parent Policy Counsil last week, and is now in place! Here is the added paragraph:
"Upon arrival of the bus at school, the bus driver is responsible for ensuring that all children remain in their seats until the bus door is opened. The bus driver will wiat to open the bus door until the designated adult(s) is outside the bus door to assist children in getting off the bus. Once the bus door is open, the bus driver will dismiss the children from the bus by rows, to prevent too many children from getting off the bus at one time. The designated adults will ensure that all children proceed from the bus to the school safely."
Allison is doing well, she had her 151st infusion on Sunday! WOW we are coming up on three years on Aldurazyme! It is amazing!
We went to Ashley's school Carnival this last weekend and had a great time! The new pictures were taken at one of the booths there. I love the photographer that is there every year! He is so good! The pictures are cute, but I scanned them in so they are a little fuzzy....Enjoy!
I have decided not to send Allison to the Extended Year School Program this summer. I think she will benefit more from being at home, with the daycare kids. I have most of my older kids that are now in school comming back for the summer, so there will be plenty of kids her age and older for her to play with. I want her to have a wonderful summer, and be able to be outside playing with friends as much as possible.
Not much else going on to report! Have a great week or two! :)
Love,
Jenn, Jim, Ashley and ALLISON!
Tuesday, March 21, 2006 9:51 AM CST Well, It is about time that I update you all! LOL the time just gets away from me! We have had a pretty eventful couple of weeks! I am sorry to say that Miss Allison has had another bout with a nasty virus, and two more rounds of antibiotics for her sinus infection. I hope that now we can finally be germ free for a while! Her poor little system can't handle too much more!!!
Allison has also taken a couple of bad falls in the last three weeks. The first fall was at school. She was off of the bus, and standing by the aide. I guess she saw a friend and his mom comming, and decided to run to say "HI". She tripped and fell. Allison has a pretty limited range of motion in her shoulders, and when she falls forward, she is not able to get her arms up fast enough or high enough to protect her head. She smacked her forehead on the cement, and had a HUGE purple goose egg. Poor baby! The second fall :( was down the steps of the bus. The bus had pulled up to the school, and the kids lined up down the center isle waiting for the aides to come to get them. Allison was first in line... she somehow slipped down the stairwell, and fell onto the landing of the bus steps. She had TWO big goose eggs on the side of her head...:( Poor baby! I really did some checking as to the procedure in place at school for getting the kids off of the buss, and into the school. I believe Miss Allison has taught them that there is a need to beef up their procedure to make all of the kids safer, and make sure that NO CHILD is close enough to the steps to fall down them if there is no adult right there!!!
As a result of Allison's falls. I learned that the school nurse, as well as the bussing staff, has NO IDEA of Allison's diagnosis. Her Emergency Information Form had not been passed on to them. Parents! If your child has medical information that all adults involved in her care need to know, PLEASE call and double check...make sure that EVERYONE involved has all of the information they need! I assumed that my giving the Emergency Information Form to the IEP team, and the principal was good enough. That the school would get a copy to everyone that needs it. I was wrong. If Allison's falls had been more serious than they were, we would have been in TROUBLE! No one around her at the time of the falls knew anything about her medical condition. ( YES! This includes the weakness in her cervical spine!!!)
It has been a stressful couple of weeks for us, I am really hoping for some nice borring days! Thank you for checking on Miss Allison! Please pray that I do NOT get a call from the school nurse AGAIN this week!
Love,
The Restemayers
Friday, February 24, 2006 2:34 PM CST ****REMINDER**** Saturday, Feb 25th, 2006 is National MPS Awareness Day! Please be sure to wear purple, wear your purple ribbon or Tattoo!
Today NASDAQ has invited the National MPS Society, Genzyme, Biomarin and Shire to close the stock market in honor of National MPS Awareness Day! Congratulations to the MPS Society! To view the closing go to: http://www.nasdaq.com/reference/marketsite_about.stm
The National MPS Society is also launching their "Join the Search" Campaign! The goal of "Join the Search" is to help families and physicians identify MPS/ML disorders early, so there can be earlier treatment! Please go to www.jointhesearch.org for more information.
Well, We have had quite the week around here! Allison got a very nasty stomach bug early Monday morning. She could not even keep a sip of water down most of the day. We did get her some anti-nausea medication, and that helped a TON! Tuesday, she was done with the vommiting, but everything was comming out the other end :( Wednesday, we still kept her home from school because she had not eaten anything since Sunday night. Wednesday, I got the stomach bug! :( Finally Thursday Allison was able to go to school. She passed out her suckers that had a card on them the read, "Help us "Lick" MPS... Raise Awareness! I sent 30 suckers with her and NONE of them came home! Ashley also took 30 suckers to school!
Allison is doing her infusion right now, and everything is going well. She has been sleeping for 2 1/2hours! I think she needed the extra rest and the extra fluids to completely get over that stomach bug! It sure was a nasty one! Thank you for checking on Miss Allison
Happy National MPS/ML Awareness Day! Wear Purple!
Friday, February 17, 2006 1:59 PM CST Allison is doing well. She is getting her infusion right now. I hope to start seeing some benefits of the increased dose of Aldurazyme within the next couple of weeks, but just knowing she is getting the dose she needs again gives me comfort!
I am pasting the email I recieved from the National MPS Society about National MPS Awareness Day! Yeah! It passed the Senate! Here it is!
February 17, 2006
Senate Passes National MPS Awareness Day Resolution
We are proud to report that the Senate on February 16, 2006 passed by unanimous consent the Resolution designating February 25 as National MPS Awareness Day. Thanks to the diligent efforts of the Society’s members who garnered support of the Resolution. Please read the resolution below as presented verbatim to the Senate.
Thanks, as always, for your support.
Committee on Federal Legislation
Congressional Record article 50 of 57
NATIONAL MPS AWARENESS DAY -- (Senate - February 16, 2006)
[Page: S1446] GPO's PDF
---
Mr. FRIST. Mr. President, I ask unanimous consent that the Senate now proceed to the consideration of S. Res. 378, which was submitted earlier.
The PRESIDING OFFICER. The clerk will report the resolution by title.
The legislative clerk read as follows:
A resolution (S. Res. 378) designating February 25, 2006, as ``National MPS Awareness Day.''
There being no objection, the Senate proceeded to consider the resolution.
Mr. FRIST. I ask unanimous consent that the resolution be agreed to, the
[Page: S1447] GPO's PDF
preamble be agreed to, and the motion to reconsider be laid upon the table.
The PRESIDING OFFICER. Without objection, it is so ordered.
The resolution (S. Res. 378) was agreed to.
The preamble was agreed to.
The resolution, with its preamble, reads as follows:
S. Res. 378
Whereas Mucopolysaccharidosis (referred to in this preamble as ``MPS'') is a genetically determined ysosomal storage disorder that renders the human body incapable of producing certain enzymes needed to breakdown complex carbohydrates;
Whereas complex carbohydrates are then stored in almost every cell in the body and progressively cause damage to those cells;
Whereas the cell damage adversely affects the human body by damaging the heart, respiratory system, bones, internal organs, and central nervous system;
Whereas the cellular damage caused by MPS often results in mental retardation, short stature, corneal damage, joint stiffness, loss of mobility, speech and hearing impairment, heart disease, hyperactivity, chronic respiratory problems, and, most importantly, a drastically shortened life span;
Whereas the nature of the disorder is usually not apparent at birth;
Whereas without treatment, the life expectancy of an individual afflicted with MPS begins to decrease at a very early stage in the life of the individual;
Whereas recent research developments have resulted in the creation of limited treatments for some MPS disorders;
Whereas promising advancements in the pursuit of treatments for additional MPS disorders are underway;
Whereas, despite the creation of newly developed remedies, the blood brain barrier continues to be a significant impediment to effectively treating the brain, thereby preventing the treatment of many of the symptoms of MPS;
Whereas treatments for MPS will be greatly enhanced with continued public funding;
Whereas the quality of life for individuals afflicted with MPS, and the treatments available to them, will be enhanced through the development of early detection techniques and early intervention;
Whereas treatments and research advancements for MPS are limited by a lack of awareness about MPS disorders;
Whereas the lack of awareness about MPS disorders extends to those within the medical community;
Whereas the damage that is caused by MPS makes it a model for many other degenerative genetic disorders;
Whereas the development of effective therapies and a potential cure for MPS disorders can be accomplished by increased awareness, research, data collection, and information distribution;
Whereas the Senate is an institution than can raise public awareness about MPS; and
Whereas the Senate is also an institution that can assist in encouraging and facilitating increased public and private sector research for early diagnosis and treatments of MPS disorders:Now, therefore, be it
Resolved, That the Senate--
(1) designates February 25, 2006, as ``National MPS Awareness Day''; and
(2) supports the goals and ideals of ``National MPS Awareness Day''.
Thank you for checking on my baby!
The Restemayer's
Monday, February 13, 2006 4:19 PM CST ****Reminder! Feb. 25th is National MPS/ML Awareness Day! Please remember to wear Purple in honor of our kids! If you have a purple ribbon, PLEASE wear it! Thank you!
Allison has been celebrating her birthday for TWO WEEKS! February 5th, Allison officially turned 5 years old! We celebrated her birthday as a family on her special day, and Saturday, Feb.11th, Allison had a birthday party with 12 of her friends! They had a great time! New Pictures are in the photo album!
We gave Allison a higher dose of Aldurazyme this week! She has been showing some signs of not having enough medication... Her stomach looks more distended, her face and hands are puffy, and she just does not have the amount of stamina that she usually does. I took her in to the clinic for a sinus infection, and her Pediatrician noticed the same things. Please pray the the higher dose of Aldurazyme does the trick! I hope that in a few weeks, she will be getting back to "normal" for Allison. :)
Her port seems to be working well again! We have not had any troubles with it for the last few weeks! YEAH!
Happy Valentines Day! I hope everyone has a great day!
Love,
The Restemayer's
Sunday, January 29, 2006 5:56 PM CST HAPPY (almost) BIRTHDAY TO ALLISON! Aunt Jessica and I (her Nana) have spent a wonderful week here at the Restemayer household. I have gotten to see Alli get on the school bus and spent a morning with all her classmates.
Such fun! I was so proud of Alli as I watched her be the BIG GIRL at school!! We have partied all week long and now the week before her birthday (Feb 5) we will be singing Happy Birthday and blowing out her candles tonight. We baked cookies together and opened presents, and MORE presents. Jess and I got to witness Alli's infusion day and we got to see how well Jennifer does. Alli is growing up fast, almost 5, and we are all so proud of her. Allison is such a gift to our family and oh, how we love her!
Happy Birthday Baby Doll!
Love,
Nana
Monday, January 2, 2006 10:24 AM CST Happy New Year! I hope everyone had a great New Years Eve!
I have not posted lately because we are still in limbo as far as Allison's port goes. We did TPA in early December, and Allison's port worked fine for the next two weeks, then the third week, it was extremely hard to flush again. We went in for another 24 hour TPA this last Tuesday, and after, it worked well. We did Allison's infusion on Sunday, and the port was flowing, but not as easily as it should have been. I guess we will wait and see this week how things go. I would like to wait a little longer if we can before we put her through a surgery.
Allison had a very busy Christmas season! She had a program at Church, and a program for her preschool! We have been singing Christmas songs NON-STOP! LOL Allison lost her bottom front tooth on Christmas Eve. Now she is missing BOTH bottom front teeth! The Tooth Fairy and Santa came to our house on the same night! Alli thought that was really cool! Santa was very good to both of my girls again this year, I think they had a very nice Christmas. Christmas is not over yet for them! We will be going to Grand Forks and Crookston in two weeks to celebrate with our extended families.
I will keep everyone posted on any additional port issues, I feel like we have been on the fence about this for a while now....
Thanks for checking on my girl! ***New Pictures****
Saturday, December 3, 2005 1:14 PM CST UPDATE*** Well, The TPA did not do the job we hoped that it would. Allison's port is flowing some, but there is obviously still an obstruction in there somewhere. We have an echo scheduled for Wednesday afternoon at 1pm, I hope that will tell us a bit more about what is going on. I will keep you posted!
Miss Allison could use a few extra prayers today! I think I jinxed us with my last entry. I told you that we were not having any more port issues....Well, the following week, we had a really hard time flushing Allison's pot. It was working OK, but not well. I did her infusion and there were no problems until I tried to Heparin lock her port so I could take the needle out. The saline flush was extrememly hard to push into the port, and the Heparin was even harder, it was like it was getting worse by the second. I called the on call pediatrition and she thought that as long as I got the Heparin in her, we were fine for that day and to go ahead and take the needle out of the port. I should make an appt with Allison's regular pediatrition as soon as we could get in. We made an appt for Yesterday to get a drug called TPA put into her port. TPA is supposed to get rid of any clots or buildup in the line. We arrived at noon yesterday, go the TPA put in Allison's port, waited 2 1/2 hours, tried to flush her port, and it was NO better. Allison had to sleep with her port accessed last night.... We put another round of TPA in her port yesterday around 3:30 pm and we are waiting 24 hours to see if this helps. Please! Let this work! If it does not work, we will need some x-rays to see if the port is still in the right position or if it is kinked or bent in any way. I will update when we get home from the hospital this evening. Wish us luck!
Thursday, November 24, 2005 6:23 PM CST Happy Thanksgiving! I hope all of you are having a wonderful day full of Family & Friends. My sister, Jessica is here for Thanksgiving! Allison and Ashley have had a great day playing games with their Aunt.
Allison has had a pretty good week. She has another ear infection, but hopefully this one will clear up and NOT come right back. Infusions are still gong well. No more trouble to report with her port! Thank Goodness!
Allison's IEP meeting will be on Friday, December 2nd. I am nervous about this one because she will be in Kindergarten next year...So now is the time that we start to transition into elementary school. I hope and pray that the elementary school is willing to learn about MPS, and that they are willing to give Allison the assistance she will need.
****NEW PICTURES***
Thanks for checking!
Jenn
Monday, November 7, 2005 10:26 AM CST Good Morning! I am sorry for the lack of updates. It has been a hard month for our extended MPS family. Too many of our kids have earned their angel wings in the last month or so. It takes a toll on all of us.... Please pray that the families of our newest angels find comfort and peace.
Allison continues to do very well! She loves school and is Mad at me on her days off of school! Medically, she is also doing well. She has a sinus infection right now, but will hopefully recover quickly.I took tht girls in for their Flu shots on Thursday evening. I am happy they were able to get the shot this year!
Alli lost her first tooth last weekend! I was so surprized, I had not even realized that it was loose. The bottom front tooth was gone when she woke up last Sunday morning. The other front bottom tooth is very loose and we are expecting it to fall out anyday! Allison was not sure if she liked the idea of the tooth Fairy coming into her room while she was sleeping... She loved waking up and finding money under her pillow, but is pretty sure that the Tooth Fairy does NOT need to come back again! LOL
The walk/run was Wonderful! There were 30 MPS families there! The picture at the top are of the families that were at the run! Thank you Tami! We had a wonderful time!
Have a great week! Thank you for checking on my baby!
Sunday, October 16, 2005 8:50 PM CDT Allison's infusion went just fine today once we finally got it started! I accessed Allison's port this morning, but could not get a blood return! I thought maybe I missed the port (even though I felt it go in) and pulled the needle out. I re-accessed her port, Knew without a doubt that the needle was IN and still could not get a blood return. I was able to push fluid in (not as easily as it should have gone in) but I could not pull any out! SCARY moment! I pushed 5ml's of Heparin into her port and waited about 15min. Thank goodness her port worked fine after that, and we were able to do her infusion! I talked to a nurse at our ped's office, and if this happens again we may heve to go in and get TPA put into her port. TPA dissolves blood clots, and when left in the port for a period of time, it should really clean out the port of any sediment or small clots that may be in there. TPA sounds like a good idea and we will definately do this if we need to....I just HOPE we do not need to!
ATTENTION: October 22, 2005 is the MPS/ML walk and Run LA!
Allison and I have been lucky enough to attend this fundraiser for MPS/ML disorders and the Family Meeting that is held afterward, for the last two years! This year, our whole family is going! I am so excited for Jim to meet these wonderful families! Our MPS/ML family is so welcoming, it is a circle of friends that I never imagined we would find. All of the families that are there have been affected with MPS/ML, they understand the fear, and the everyday roller coaster of MPS/ML disorders. I remember being SO AMAZED by the strength, courage, and kindness that I witnessed the first year Alli and I were able to go to the walk/run. These parents come together every year to raise money to find a treatment for ALL MPS/ML disorders, and we all hold out hope for a cure.
***Please if you can, send a donation to help us find treatments and ultimately a cure for our children!
The National MPS Society
1407 Foothill Blvd. #28
La Verne, CA 91750
Thank you for checking on my baby!
Monday, October 10, 2005 7:37 PM CDT Hi! Sorry for the delay in updates, we have been busy! Allison is doing well, other than her first double ear infection of the season :( She LOVES school and is very excited to get on that bus every day.
We had a MAJOR blanket incident last week. Allison woke up and there were two really big holes in the seam of her blanket. She had also put her foot through the batting on the inside of her blanket, and that needed to be replaced too. I am NOT a seamstress, so I was not at all sure that I would be able to save the blanket, but as you can see from the picture above, I fixed it the best I could!
Our whole family is headed to Sunny California next week! We are goin to Tami Slawson's Walk/Run fundraiser for the National MPS Society! I will attatch the last entry for you to read about it!
ATTENTION: October 22, 2005 is the MPS/ML walk and Run LA!
Allison and I have been lucky enough to attend this fundraiser for MPS/ML disorders and the Family Meeting that is held afterward, for the last two years! This year, our whole family is going! I am so excited for Jim to meet these wonderful families! Our MPS/ML family is so welcoming, it is a circle of friends that I never imagined we would find. All of the families that are there have been affected with MPS/ML, they understand the fear, and the everyday roller coaster of MPS/ML disorders. I remember being SO AMAZED by the strength, courage, and kindness that I witnessed the first year Alli and I were able to go to the walk/run. These parents come together every year to raise money to find a treatment for ALL MPS/ML disorders, and we all hold out hope for a cure.
***Please if you can, send a donation to help us find treatments and ultimately a cure for our children!
The National MPS Society
1407 Foothill Blvd. #28
La Verne, CA 91750
Thank you for checking on my baby!
Wednesday, September 21, 2005 9:39 AM CDT Attention: October 22, 2005 is the MPS/ML walk and Run LA!
Allison and I have been lucky enough to attend this fundraiser for MPS/ML disorders and the Family Meeting that is held afterward, for the last two years! This year, our whole family is going! I am so excited for Jim to meet these wonderful families! Our MPS/ML family is so welcoming, it is a circle of friends that I never imagined we would find. All of the families that are there have been affected with MPS/ML, they understand the fear, and the everyday roller coaster of MPS/ML disorders. I remember being SO AMAZED by the strength, courage, and kindness that I witnessed the first year Alli and I were able to go to the walk/run. These parents come together every year to raise money to find a treatment for ALL MPS/ML disorders, and we all hold out hope for a cure.
***Please if you can, send a donation to help us find treatments and ultimately a cure for our children!
The National MPS Society
1407 Foothill Blvd. #28
La Verne, CA 91750
Here is a link to a slideshow from last years walk run! Can you count how many times you see Miss Allison in this slideshow? http://www.mpsrun.com/images/MPShighweb.wmv
you will have to copy this link and paste it to your address bar :)
Allison is now going to school 4 days per week! She is having such a great time, she decided that she needed to go every day that she could! I can hardly beleive how grown up she is getting! I will try to take a few new pictures this week and get them posted!
Again, Please make a donation to the Walk/run fundraiser, and help us help our kids!
Thank you,
Jennifer
Sunday, September 4, 2005 10:04 PM CDT Allison had infusion # 120 today!!! She is doing really well! It is still a little nerve wracking for ME, because Miss Allison stops just before I am about to access her port, and looks at me and says, " Remember to do your VERY best, Mom " LOL! I always tell her that I will be very careful and I WILL do my VERY VERY best.
Alli had two mornings of SCHOOL last week! I put my baby on a bus at the end of our driveway and had to watch her go. OH that was harder than I thought it would be. Alli has done GREAT! She tells me that she is the best school girl in the world, and I believe her! So far, she has been completely independant in the bathroom at school, and has not had any accidents! That is a HUGE deal for me! I have been so worried about how the whole potty thing would go for her at school, because I always help her. She expects me to help her and when I try to tell her that she can go in and do what she needs to do, she refuses until I help. Her main problem is getting her pants down and then up again. She had Carpal Tunnel Surgery on her hands last Nov. I guess I have just automatically continued to help.
I have heard form her teacher that Allison is a good listener, and seems to be with a bunch of kids when they have free time. YEAH ALLI! I am so proud of my school girl! Allison will go to school three days this week, and four days the next! I hope and pray everything continues to go as well at school for Allison as it did this week!
I have heard from my Mom! She and her husband, Jon are back in Gulfport, Mississippi. Their house is damaged, but livable. My Nana's (grandmother) house is more extensively damaged and is not safe to live in. Mom and Jon's Ice Cream Corner is also damaged, but not destroyed. They will no doubt have a ton of clean up and a long list of repairs, but they are all safe and sound as if they are staying hopeful. If you are a friend of my mom's, and would like to know more, please email me with the link at the bottom of this page!
Love,
Jennifer
Tuesday, August 23, 2005 10:09 PM CDT The picture above is of Allison and her Preschool Teacher! Back to School night was Monday night for Miss Allison, and she will be attending preschool Tuesday and Thursday mornings! Alli's first day of school will be Tuesday Aug 30th!
Our Appointments at Fairview were very long...and involved.
I am having a hard time bouncing back from our week there.
Alli's developmental testing went well, and they felt she is developing at the same "normal" rate that she has been. This is very good to hear! Her test scores may come out a little lower than last time, but mostly because of her range of motion issues. Most 4 yr olds are able to dress themselves, Alli can't reach the top of her head and that makes it pretty hard to put on or take off a shirt. The most important thing to me is that they feel she is continuing to learn and socialize at an age appropriate level.
Pulmonology went very well, Alli has no issues there. Endocrinlogy went OK, although Allison's rate of growth has decreased. We had some labs drawn and I will let you know how that comes out. Growth homones were mentioned, but we will wait and see how the lab work looks. Cardiology was OK. Alli has mitral valve thickening and a 1st degree AV block. The AV block was a little worse than last year, so it was suggested that we do a 24hour Halter monitor to be more sure of how her heart is functioning.
Alli had an EMG while under sedation. The write up from the EMG shows that there has been Marked Improvement since the carpal tunnel surgery she had in November! Yeah! We were given hand splints for Alli to wear at night. They should help increase her range of motion by slowly stretching her fingers to a straighter position. There is also a gel insert that should help soften the scars on her fingers, and hopefully that will help with her ROM too. Some of the scars on her fingers look like a thread going over the inside of the knuckle. They seem to pull, and cause her not to be able to fully extend her fingers. I hope that the gel insert on the splints will help the scars!
Alli also had an MRI and Lumbar Puncture whil under sedation. The Lumbar pucture pressure was elevated, but was lower than her pressure was last year. We are going to continue to closely monitor this issue. Her MRI showed changes in the T2 signal in ther Cervical Spinal Cord at the C4-C6 level. What exactly this means for Allison, I do not know. From what I understand, Allison has a weakness, and/or possible compression in the top section of her spinal cord. We are to restrict her from doing activities like jumping on a trampoline or a moon bounce, from doing summersaults or any other tumbling. I have requested a playground aid for Allison when she is at preschool. A fall from playground equiptment could result in a major irreversable spinal cord injury. Alli's team of Doctors and nuerosurgeons are to have a team meeting to discuss how much of a change in her spine there has been in this last year, and what our course of action will be. I will let you know as soon as I know...
This issue really has thrown us for a loop. Any research I have done on my own, has really scarred me. I have decided that until I know more, I can not research. I am having nightmares!
Allison had xrays taken of her hips, spine, and knees. We will get a write up on the results of those soon.
Alli also saw Opthalmology, her vision is good! She is at 20/40 in both eyes! She has mild corneal clouding, but the corneal clouding has remained stable since she started ERT.
I think I covered most of it. I will let you know more as I get some of the write ups in the mail. I have to say that the week of Allison's annual tests is the most stressful week of the year. MPS never goes away, and there is not a day that I do not think of the disorder that Allison has, but to go to for the annual appointments where every single doctor that you see feels the need to tell you worst case scenario. I am emotionally pummelled every time we go. Every doctor is searching for the textbook MPS issues in my child, and DAMN they are finding issues. We were told over and over that Allison puzzles the Docs because she is doing so well, and in the next statement we are told of an issue Alli has that could be considered natural progression of her disease. Please understand, We are so very greatful that Allison is doing as well as she is, but at the same time we are scared to death of what could happen. I know Enzyme replacement therapy is without a doubt helping Allison and slowing the progression of the MPS, but is it enough? Whew! Sorry for the outburst! I will keep everyone posted on any new information from her tests!
Thank you everyone for all of the prayers and good thoughts while we were in Minneapolis!
Love,
Jenn
Tuesday, August 9, 2005 5:01 PM CDT It has been one year today since our dear friend Jessica Wellman held her Kaity-bug for the last time. Jess has done so much for all MPS families by creating the MPS forum, please stop by ^^Kaity's^^ caringbridge page and let Jess know we are thinking of the whole Wellman family today. There is a link at the bottom of this page. Thanks!
Here we go! We leave tomorrow for Mpls. Our appointments start at 8am on Thursday!
Allison Restemayer 08/11, 08/12, 08/15/05 Appointments
Thursday 08/11/05
Dr. Shapiro/Kate: 8:00 am (Kate will work on fitting in additional time b/w other appts for feedback)
Dr. Ternand: 10:00 am
Dr. Milla: 10:45 am
Anesthesia consult with Dr. Belani: 11:30 am (okay to walk over with chart to 3rd floor then per anesthesia scheduling, Dr. Belani is there that day)
Echo/EKG: 1:00 pm on 6A
Dr. Braunlin: 2:00 pm
Friday 08/12/05
Dr. Rimmell: 8:30 am (mom to bring local audiology records with her)
Anesthesia time scheduled 10am-12:20pm (arrival at 9am) – Dr. Belani requested
Cranial MRI without contrast (10:00 am)
EMG (11:00 am)
LP (11:45 am or so) – to be done by Dr. Whitley
Monday 08/15/05
Dr. VanHeest: 8:00 am (parents to talk with Dr. VanHeest about any x-rays for hips to
be done that day if possible)
Dr. Charnas: 11:15 am
Dr. Whitley: 1:00 pm
Dr. Bothun: 3:00 pm
Please say an extra prayer for Miss Allison on Friday, as she will be put under for tests! Thanks!
Love,
Jenn
Tuesday, August 2, 2005 2:24 PM CDT HI! I think we have our schedule for Fairview just about nailed down! We leave on Wednesday, August 10th and start appointments on the 11th. I will let you know the schedule right before we leave. :)
We had a very busy weekend! Allison and Ashley got to see their Nana and Aunt Jessica. We stayed in a hotel and the girls were able to swim and swim! They got to go to Space Aleins for supper one night and to Chuckie Cheese the next! We are ALL exhausted! I will update with a schedule before we leave for the cities!
Love,
The Restemayer's
Monday, July 25, 2005 10:06 PM CDT ** I moved the picture of the rainbow to the photo page, so I could show you what the hail did to one of the sand toys!
Hi! Well, we have had a busy week! Ashley celebrated her 10th birthday on July 19th, followed by a slumber party on Friday! Happy Birthday baby!
Allison is doing very well. She seems to have a better sense of balance lately! She is falling less, and when she does fall, she seems to be able to catch herself before she really hits her head hard! We have not had to get an icepack out for 3 whole weeks!!! EVERYONE knock on wood NOW! I have also noticed that she is grinding her teeth less frequently during the day. I hope these trends continue and are not just a phase! I really think the soy isoflavone, Genistein, has something to do with these improvements! I hope so!
Thursday night we had a very severe thunderstorm :( We had golfball size hail. Unfortunately, we did not realize the severity of the thunderstorm until it was too late. Both our car and our truck were in the driveway and sustained major hail damage. Jim's truck had both of the side mirrors broken out, and both cars are severely dented :( The siding on our house is also VERY dented. We have a few windows that are now leaking, but thankfully none of them were completely broken. It looks like both the cars and the house will be assesed by our insurance company next week for damage. I hope they cover the majority of the damage. The girls were very dcared during the storm, but their biggest gripe was that most of the sand toys were broken! LOL
I have been on the phone with Fairview to schedule Allison's annual appointments. I will let you know when we have a schedule nailed down. We are looking at the week of August 10th.... somewhere around that date anyway!
Thanks for checking!
Love,
Jennifer
Thursday, July 14, 2005 9:59 AM CDT Good Morning! I did Allison's infusion by my self this week! I am excited that we are able to start moving Allison's infusion day back one day each week, and in two weeks we will be at Sunday! We did the infusion on Tuesday this week, and mext week it will be on Monday, then we will be at Sunday and most likely will keep it on Sunday!
Last weekend, I took the girls out to McDowell Dam! We used to take Ashley out there before Alli was born, but we have not been there since! Alli got to swim in a little lake for the first time! I told her we were going to the beach, and she was excited! As we drove up, she could see the water and informed me that she was NOT going in there to swim! LOL It did not take long before she had her feet in the water, and soon she put her floatie on and got all the way wet! They had such a good time on Saturday, we decided to go back on Sunday! Enjoy the new pictures!
Have a great week!
Love,
Jenn
Thursday, July 7, 2005 10:19 AM CDT First of all, I want to send my prayers out to all of the people in London affected by the Terrorist Attacks this morning! This is TERRIBLE!
Allison is doing well! We had a fun 4th of July weekend, and participated a lot of festivities! Sunday Ashley and Allison were in the Doll and Pet parade! Alli had a good time pushing the stroller around. Ashley thought it was OK, but only did it because she had to walk next to Alli to make sure Allison stayed with the line! LOL
I have started Allison on a Soy extract. Genistein is a soy Isoflavone, found in many over the counter supplements. It is beleived to reduce the amount of Heparin Sulfate produced in the body:
genistein acts as a substrate reduction therapy in the case
of MPS. (He's working on MPS1,2 ,3A and 3B.) The body normally produces
far too much Heparan sulphate for it's needs so it's the excess that is
not being broken down in our children but is stored in the lysosomes of
every cell. If we can limit the production of Heparan sulphate to the
amount the body needs, the storage will stop, possibly even reduce.
Professor Grzegorz Wegrzyn at the Gdansk University, is now doing a clinical trial in MPS III children! Jim and I talked at length about this soy extract, and decided that we would try giving Allison the Genistein in addition to the ERT. Genistein has been proven to cross the Blood Brain Barrier with a 10% efficiancy in mice. If it crosses the BBB in humans, this would be a major breakthrough in the treatment of some of the MPS disorders!!!!! Please pray that the Genistein crosses the BBB and will be proven as a way to help some of our MPS babies!
Finally, We will be on our own now for Allison's infusions! I have been training for many weeks, and the nurses have confidence that I can handle Alli's infusions on my own! After 111 infusions, I am READY! I will be moving her ERT back one day per week until we get to Sundays. She will be able to have her infusions on Sunday afternoons, and it will not interfere with any activities! I am so happy for Alli! We now have the ability to work around Allison and her activities!
Thank you so much for checking!
Love,
Jennifer
Wednesday, June 29, 2005 4:27 PM CDT HI! Allison had another good infusion today! I am still training to do the infusions on my own, and it looks like I will have one week of training left! I have accessed her port for the last 4 weeks, and the last two weeks, I have done everything but the vitals every 15 min. I still have the daycare kids here during infusions until the nurse is done comming and then I can do the infusions AFTER the kids leave! It was a little hectic today, but everything went fine. I will be happy when we can so the infusion without the daycare kids here. I KNOW it will be a lot less noisy and a lot less stressful! I won't be pulled in 6 different directions at once. Allison will be much more mellow if there are not 6 kids running around in the same room as she is in!
Thank you for checking, and have a GREAT 4th of July!
Love,
The Restemayer Family
Friday, June 17, 2005 5:20 PM CDT Hi! Guess what! I accessed Allison's port again this week! ONE Poke! Yeah! Alli is still doing very well. She has been so busy outside playing, she never wants to come in!LOL Enjoy the new pictures! Otherwise there is not much to report this week. I guess no news IS good news!
Love,
The Restemayer's
Thursday, June 9, 2005 2:57 PM CDT I know! It has been TOO long since I have updated the page! Sorry! I think (knock on wood) that Allison is FINALLY over these respitory infections! She is feeling great! Yesterday was a milestone for me! I accessed Allison's port for the first time! Greta, Allison's nurse from the clinic, was kind enough to take the time to write down step by step instructions for me and let me borrow a practice port! She supervised as I accessed Allison for the first time yesterday! Luckily, Allison cooperated too :) I think I did just fine, and I have confidence that I can do it from here on out! The home health nurses can watch ME for a change! LOL
I will try to take some pictures this week so I can add some new ones!
Please say an extra prayer for my dear friend Sammie Slawson. She is on her way to St. Judes as I type. Please pray that this procedure works and gets rid of the tumors on her little feet, with out doing any damage!
Her website is...: http://www2.caringbridge.org/ca/slawson/
I just know she would love it if you would stop in, sign her guestbook and show her some support!
Thanks for checking on our Allison!
Friday, May 20, 2005 1:15 PM CDT Allison had her 2 year Anniversary on Wednesday! Please check out the slideshow! Tami did a WONDERFUL job! Thank you Tami!
http://www.mpsrun.com/images/AlliHigh.wmv
We decided that 2 full years on Aldurazyme warrented a PARTY! I think Alli had a pretty good day! She decided on Puppy chow and orange pop for snack, and we went and got an orange balloon for everyone! She even got a couple of presents to open!
Yesterday was not as fun as Wednesday...Alli spiked a high temp AGAIN! Motrin was not taking it down, and she is still wheezy from her last repitory infection. I was getting worried about pnemonia.. I took her in last night, thank goodness her Ped was in the walk-in clinic, she had chest xrays, and sinus xrays. The xrays were both ok! WHEW! BUT whatever bacteria this is, Augmentin has not been working for her. We decided on a shot of Rocephin and a 7 day Zythromax combination. She has not had a shot in a long time, and Rocephin is a PAINFUL one :( Her legs are very very sore today and she is very teary. Her temp is normal again though, and I am hoping that is a very good sign!
I am hoping that Miss Alli can finally get well and STAY well at least for the summer! I want her to be able to take full advantage of the nice weather and get out there as much as possible!
Thursday, May 12, 2005 9:27 PM CDT I am so sorry for the delay in updates!!! I KNOW it has been three weeks! The picture up above is of Allison durring her 100th infusion! She was at the table eating snack (which is why her face is dirty! LOL) If you look you can see her bag of Aldurazyme hanging on her pole in the background!
We have had a rough two weeks, I came down with Bronchitis and am still battling a bit of a cough. Allison ran a very high temp for two days, and then the virus settled in her chest and she started coughing and coughing! We started Augmentin :( and the nebulizer treatments last week and are still on both. I am hoping to start to taper off the nebulizer treatments, but just as I think she is getting better, she will wheeze and cough even more. Ashley has avoided this bug so far, BUT she has been very emotional the last few days, and seems to be constantly tired. Tonight she asked for Nyquil before bed because she says she was coughing. Lets HOPE that she does not get this too!
Allison will have her 104th infusion this Wednesday! I can hardly believe it has been two years! I will be working on getting some pictures together so you can see the difference ERT has made for her in the last two years! My friend, Tami is going to make a video slide show of the pictures that I find! THANK YOU TAMI!!!
As Always, thank you for checking on my Allison. It is amazing to see the number of hits on her webpage continue to go up everyday!
Please keep praying for all of the babies!
Jenn
Saturday, April 23, 2005 8:15 PM CDT
Allison had infusion # 100 this week! Great Job Alli!!!!!
I tried to take some picture of her 100th infusion, but.....I accidentally deleted my whole disk from my digital camera! :( I was sick! I can't believe I did that! Allison is doing very well medically! I hope that our cold season is about over though. I think she is stuffing up again :( I guess we will try the claritin this time!
There are new pictures though...We went to a school carnival today and there was a photographer there as a fundraiser for the school. We were at Allison's school carnival from 12noon until 2pm, and Ashley's school carnival from 4pm to 7pm! I am all carnivaled out, but the girls did not want to leave!
Thank you for checking on my baby! I hope you like the new pictures!
Love,
The Restemayer's
Thursday, April 14, 2005 9:01 AM CDT Good Morning! Allison had infusion #99 yesterday! She is doing very well with her infusions! We are enjoying Home infusions, it seems to be easier on ALli because she is still able to be at home and play with her friends while she is doing "Medicine Day"
Alli had her Audiologist appointment yesterday and everything came out fine. The Audiologist was a new one, and he was very child friendly. Alli followed directions very well. He did three separate tests and used the results from all three to determine that Allison has a mild hearing loss in both ears, but he feels that this is due to the constant ear infections and MAY correct itself over time. For now, we should continue to read to her and talk with her to make sure her development stays on track. (AS IF we could could go a day without reading to her or talking to her :) ) I was very happy that the appointment went to well!
Have a great week! Thanks for checking!
Thursday, April 7, 2005 9:37 AM CDT Allison had infusion # 98 yesterday! WOW! She is doing very well! The weather is getting nicer everyday and we are starting to get outside more and more.
Last Monday night Alli woke up with a high temp, and vommiting. She ran a high temp for about two days. By last Thurday, she developed a bad cough. We started Nebulizer treatments and she is doing better now, but we are STILL doing the nebulizer treatments. SHe also had another ear infection with this virus. She started antibiotics and is now almost done with them, I am a little concerned though because when she started with the ear infection, she seemed to not be hearing very well. She still seems to be having trouble hearing. We will see the Audiologist in the next two weeks. I guess we will have to see what happens. I think that I will have my Dad test her hearing too, just as a second opinion.
Please check in with my friend Sammie Slawson. She is going through a lot right now and could use as many prayers as she can get! Thanks! www.caringbridge.org/ca/slawson
Friday, March 25, 2005 9:30 AM CST Jim and I have been Married for 10 years today! Can you believe it?! Happy Anniversary Jim! I Love you! It does not feel like it has been 10 years. :)
Allison is doing very well! She started HOME INFUSIONS in January. Sorry I didn't tell you about it before, but we wanted to make sure everything was going well before we posted about it! There is a Home Health Nurse that come to our house on Wednesday afternoons. It has worked out really well. Alli will go in for blood work on Wednesday, so I will update more then.
I hope everyone has a HAPPY EASTER! Please check out the new pictures!
Love,
The Restemayer's
Friday, March 25, 2005 9:30 AM CST Jim and I have been Married for 10 years today! Can you believe it?! It does not feel like it has been 10 years. :)
Allison is doing very well! She started HOME INFUSIONS in January. Sorry I didn't tell you about it before, but we wanted to make sure everything was going well before we posted about it! There is a Home Health Nurse that come to our house on Wednesday afternoons. It has worked out really well. Alli will go in for blood work on Wednesday, so I will update more then.
I hope everyone has a HAPPY EASTER! Please check out the new pictures!
Love,
The Restemayer's
Wednesday, February 23, 2005 9:40 PM CST Reminder!! Friday Feb. 25th is National MPS/ML Awareness Day!!! Please show your support and help raise awareness by wearing purple or wearing one of the MPS society's ribbons!
Well today was the FIRST infusion that Alison has NOT slept at all! Allison did just fine throughout the infusion, but I can't believe she did not sleep!!! I had a very crabby child tonight! I think my theory on Allison's hips was right! (knock on wood) She has not been complaining about her hips so she must have just overworked them last week!
I spent the afternoon up at the state capital. I testified before the House! HCR 3054 is a resolution that would allow for a study to identify the number of children in the state of ND that have exceptional health care needs that do not qualify for any state services. The GAP in our state's system for providing services! Allison is one of the children that fall into this gap. In case anyone is interested...I have been asked to post the testimony I gave today.
HCR 3054
Madam Chair and Committee Members, I would like to thank you for the opportunity to speak today in support of a study to identify the gaps in the state’s system for providing services to children with special health care needs.
My name is Jennifer Restemayer, and I would like to tell you a little about my four year old daughter Allison. Allison is a very bright and active child. She amazes me every day with her unique personality, persistence and curiosity. In November of 2002, Allison took a hard fall and we brought her to the walk in clinic to make sure she was OK. At the conclusion of this visit, the Doctor at the walk in clinic sent us home with a photocopy of the PDR that described something called Mucopolysaccharidosis (MPS) or Hurler syndrome. The prognosis said children with MPS1 or Hurler Syndrome are typically bedridden by eight and dead by ten. We had never heard of Hurler Syndrome or MPS until that day. My husband and I were so scared of this disorder, we couldn’t even consider the possibility that Allison could be affected by it. We started the testing process...just to rule it out so we could go on with our lives. January 8th 2003, just weeks before her second birthday, Allison was officially diagnosed with MPS 1.
MPS I is an inherited lysosomal storage disorder caused by the deficiency of an enzyme called alpha-L-iduronidase. This enzyme is required for the breakdown of certain substances in the body known as glycosaminoglycans(GAGS). Without sufficient quantities of this enzyme, GAGs accumulate in virtually all organs of the body, causing progressive damage. The incidence of MPS is about one in 100,000 births. Though many patients with this disease may have the same enzyme deficiency, patients with this disease have a wide range of symptoms and experience variable degrees of disease severity. Allison has been affected by MPS in many different ways. She has corneal clouding, a mild to moderate hearing loss, Mitral valve thickening and an irregular heartbeat, she also has many orthopaedic problems and is at a very high risk for developmental delay. All of this needs to be monitored very closely. We take Allison to Fairview in Minneapolis every 6-12 months to monitor her conditions.
Allison qualified for Early Intervention services by her diagnosis. She was able to start therapies shortly after she was diagnosed. Speech Therapy and PT/OT have been wonderful for Allison! However, at age three children have to undergo developmental testing and basically have to have a diagnosis of Mental Retardation to qualify for continued services. Allison scored within the “normal” range for all areas tested. While we were thrilled with her test results, we also knew that this opened up whole new area of problems. We needed Allison to continue to get her therapies! MPS is progressive and degenerative. The typical MPS child STOPS developing, usually as a toddler, and then starts to regress! We need help to keep her on track as long as we possibly can! We worked closely with the Early Intervention team and did find a way for her to continue therapies, but because she was no longer eligible for MR-DD services, she was no longer able to be screened for the Home and Community Based waiver which allowed us to access the income and asset disregard so that she could get Medicaid. Without the Medicaid Waiver it is increasingly difficult for our family to financially provide for Allison’s ongoing medical needs.
Financially, Allison’s diagnosis has brought up many concerns for my family. She is on a new treatment called Aldurazyme, which consists of an IV infusion once a week, for life. This infusion is a synthetic version of the enzyme Allison is missing. It was approved by the FDA on April 30th, 2003. Unfortunately, the cost of Aldurazyme is very high; it is $565.00 per vial. The dosage is based on weight; Allison is 34lbs and requires three vials for a cost of $1,695.00 per infusion. As Allison grows and gains weight, she will require more vials of Aldurazyme and our weekly bill will increase. Our total weekly bills including the Doctor’s visit, supplies, the I.V. infusion center and the Aldurazyme, total $2,130.50 per week, or $110,786.00 per year.
I have searched and searched for a program within our state to assist our family with the cost of the many medical bills as well as the cost of additional out of pocket expenses that are not covered by our primary insurance. I have found that any family can receive medicaid, but with a recipient liability. Our recipient liability was estimated at $2,900.00/month. We can not afford to pay that every month before Medicaid kicks in and starts to help. I have talked to many people who work in the Department of Human Services and I have been told that IF my husband and I were to get a divorce, my children and I would qualify for Medicaid based on my income. It has also been suggested that we move our family to Minnesota because there a Medicaid waiver for children with exceptional medical needs. My husband and I have had very serious conversations about what we will do when our savings runs out and we can no longer handle the medical bills and the out of pocket expenses that our insurance does not cover. This is an ongoing source of stress for us.
A study of state programs to identify the current gaps our state has in providing services to children with special health care needs is a great start. I know there are many other families in similar situations as ours, who need help. I believe by identifying and addressing the need, support services would improve the lives of these very special children and their families.
Thank you for your time,
Jennifer Restemayer
There it is...Thanks for checking on our baby!
Thursday, February 17, 2005 10:23 AM CST February 25th is National MPS/ML Awareness day!!!!! The National MPS Society has ribbons available if you would like to wear a purple ribbon to help raise awarenes for MPS/ML disorders. www.mpssociety.org There are also purple wristbands and car magnets available for purchase!
Allison is doing very well. I think she may have over done it a little bit this weekend in her Bouncer!! We had a Birthday party with her friends on Saturday and celebrated with daycare on Friday. Both days we did the Jumping "Bean" as Alli calls it. She has been complaining of her hips hurting :( I hope she just overworked them, and they will stop bothering her soon. Motrin seems to take the pain away and keep it away for the rest of the day, so what I am thinking is that she has some inflamation in her hips from overworking them, and since Motrin is an antiinflamitory, it takes the inflamation down and the pain and inflamation do not return right away even though the motrin has worn off. I can only hope that my theory is right! If she continues to complain of her hips, we may be headed to MPLS sooner than we thought. We know Allison has hip dysplasia, but has never verbalized any pain before now. If she continues to be in pain, she may need to be seen by her Ortho to make sure her hips have not gotten any worse.
Alli had a GREAT birthday party!!! There were 9 kids here and I think they had a good time! Alli was EXHAUSTED by the end of the day! I am so thankful that she has such wonderful family of friends and people that love and support her! NEW PICTURES of the part and of Jim's cake are on the photo page! The night before the party, I had a meeting and did not have time to frost the cake. Alli had picked a Dora cake pan and wanted it to look like Dora! I had been planning on using the frosting bags and tips to frost the cake with those little stars, but I ran out of time! Jim had a list of things to get done while I was at my meeting, including frosting the cake! He did a GREAT job and I think this should be his job from now on! LOL
Thank you for checking on our Alli!
Love,
Jenn
Friday, February 11, 2005 10:03 AM CST February 25th is National MPS Awareness day!!!!! The National MPS Society has ribbons available if you would like to wear a purple ribbon to help raise awarenes for MPS/ML disorders. www.mpssociety.org There are also purple wristbands and car magnets available for purchase!
Allison is doing very well. She had infusion #90 this week! We have still been very busy remodeling our kitchen! So far the wallpaper is down, the walls were resurfaced and textured. I primed and painted last weekend and the baseboards are back up. Jim finished the new floor and the new patio door was installed this week. WHEW! Things are slowly starting to come together in there!
Allison is having a birthday party for for a few friends of hers this Saturday! I will post new pictures as soon as I can....BUT I can't find the charger for my digital camera! I will keep looking otherwise it will have to wait untill I get my film from my regular camera developed! LOL we have been living in a construction zone for a few weeks now, so I can't seem to find anything when I need it!
As always, Thank you for checking on our little Miss Allison!
Love,
Ther Restemayer's
Thursday, February 3, 2005 10:22 AM CST Hi! Allison's infusion went well again yesterday! Alli was very sick most of last week. She had a terrible cough and ran a temp of 102-103! She was fine last monday, but Tuesday morning she woke up with a temp of 102. I took her in and we did an influenza test. Thank Goodness it came back negative. She must have had some other virus and we would just have to wait it out. We tried to keep her very hydrated, and keep her comfortable. By Thurday night she was worse. Her temp kept comming back as soon as the Motrin or Tylenol wore off, and she had developed a VERY bad chest cough. Friday we decided to start her on Augmentin and start Nebulizer treatments. Thank goodness they are working! Allison has not run a temp since Saturday. She is still coughing especially when she is laying down, but that too is finally getting better.
We did go to Jim's mom's house for a very late Christmas get together on Saturday. It was great to see everyone! Sunday we went to Crookston to have a late Christmas with my Dad and his side of the family. My girls are so spoiled! They get so excited to go and have family weekends even if it is rushed an busy.
Jim put in a new floor in the kitchen last week! I love it! He worked so hard to get that done despite having 8 daycare kids running around! Hopefully this weekend I will get the kitchen primed and painted! Wish me luck!
Allison's FOURTH Birthday is on Saturday! Happy Birthday Baby! I hope you have a wonderful day! Alli has planned on going to "Space Aliens" for supper on Saturday. We will have a little party for her on Saturday Feb. 12th! Hopefully I will find the charge cord for my digital camera by then so I can post new pictures!!!
Thank you for checking on us! Please continue to pray for all of our babies!
Thursday, January 20, 2005 9:53 AM CST Good Morning! Allison had infusion # 87 yesterday! She did very well. We are so blessed to have such wonderful people taking care of Allison at Medcenter. Allison's pediatrition and her nurse are absolutely the Best! I can't thank them enough for all they do for us. It is so nice to walk in and have everyone there greet Alli, it makes her feel so special. Thank you all!
Allison has an ear infection, so we are on Augmentin AGAIN! At least she has stayed off antibiotics for quite a while until now. Ashley is also on Antibiotics! Last weekend she came down with Strep AND pink eye! LOL Poor kid!
We did not go to Grand Forks last weekend. The temperatures were literally TOO cold to travel! We had wind chills of NEGATIVE 60 degrees! It is just not a good idea to travel when it is that cold if you don't have to! I hope we will go in two weeks.
Jim and I started taking down the wallpaper in the kitchen last weekend. WOW what a project. It turned out to be a lot more trouble than we anticipated. We only got 1/2 of the wallpaper down, and it looks like we will have another weekend of work before it is all down and the walls are ready to be textured. We may be living in a construction zone for a while!
Love,
The Restemayer's
Monday, January 10, 2005 10:17 AM CST Good Morning! Sorry about the delay in updates! Allison has been busy! Alli had her first afternoon infusion last week. She started the day by running to give Ashley hugs before she left for school and falling. She hit the side of her face on the banister, she has a big bruise across her cheek, some of it scraped and is now a big scab. She bit the inside of her cheek and bled a lot :( Poor Ashley felt so bad, and I was trying to get an ice pack for it and get the bleeding under control. what a way to start the day! She is fine, but I am convinced that she is trying to give me a heart attack! LOL Starting her infusion at noon seemed to help Alli get through the day a little better! She took her nap at naptime, and even though it wasn't any longer than she usually sleeps durring her infusion, it helped!
Ashley and Allison enjoyed having company the week after Christmas! Nana, her husband, Jon, and Aunt Jessica came for a couple of days. Thanks for comming guys! We have one more weekend of Christmas left to do. We will be going to Grand Forks this weekend to do Christmas with Jim's side of the family, then to Crookston,MN for Christmas with my Dad's side of the family.
Allison had her first "Sleepover" on Friday night! She has been trying to talk me into this for a few weeks now, so we decided to just do it and see how it goes! Alli and her friend did great! We went out for supper at "Space Aliens" , the girls played for a while then went to be by 9:30pm. They slept in Ashley's room (Ashley has a double bed!) Ashley slept over at a friends house. Both girls slept all night! I will try to get a chance to post pictures!
I hope your Holidays were wonderful!
Love,
The Restemayer's
Friday, December 24, 2004 10:03 AM CST ****Please say an extra prayer for Lindsey! www.caringbrisge.org/nc/lindseysmpsjourney
She has had such a hard year! She needs all of the good thoughts and prayers she can get right now! Thanks!
Merry Christmas!
The girls are very very excited to open up their presents tonight! We are planning on making cookies for Santa this morning and after nap we will be going to the Christmas Eve Services at our church. The girls have both planned out what they will wear for church...now I just have to keep them out of their dresses untill it is time to go!
Last weekend went very very well for all of our concerts and programs! Ashley's Central Dakota Children's Choir concert was wonderful! I videotaped, and I am so glad I did! Allison decided that since I taped Ashley's concert, I HAD to tape her PRACTICE. It was Hillarious! Alli got up on stage with her class, and sang very LOUD! she was about a half a line ahead of the rest of the class and was the one voice you could pick out of the crowd! I am SO glad I got that on tape! The Church School Program was great! I was so proud of both of my girls! We were a little nervous that Alli would see all of the people and decide that this was not something she would do, but she got up there and yelled "HI MOM!" and just started singing! She sang a little quieter at the program than in the practice, and was singing WITH the rest of the kids! She did great! Ashley's group sang two very pretty songs too! I had never heard either of them before, and neither had Ash. She practiced them the whole week before the performance, and knew them pretty well by the time of the Program. It was funny, because not many of the older kids actually sang. Some would move their mouths, and pretend to sing, but they were the quietest group by far!
Jim Celebrated his birthday on Wednesday! We took him out for supper and the girls made him a cake! The cake looks a little funny, but tastes great! Ashley was in charge of the frosting, and Alli had the sprinkles! (after Alli was done with the sprinkles, we couldn't see much of the frosting! LOL) We had a great night! It is always so nice to have us together and enjoying the moment!
Alli had another great infusion on Wednesday. #84!
I have been reading webpages of other kids most of the morning. Reading about the kids who are sick really reenforces my feelings of wanting to freeze this moment in time. My family is happy and mostly healthy right now....can I stop time? This would be where I would stop time, and continue living in this time forever!
Thank you all for checking on Miss Allison! Please continue to pray for ALL of the sick kids! They need all of the prayers they can get. Also, please say an extra prayer for all of the families who have to miss their little angels this Christmas. I would like to wish you all Health, Happiness, and PEACE. Happy Holidays!!!!
Thursday, December 16, 2004 10:26 AM CST Happy Holidays! I hope everyone is enjoying the Holiday Season! I have been VERY busy trying to get the Christmas shopping done, and as most of you know, shopping with two kids in tow is NOT the easiest task! LOL My girls LOVE to shop, so whenever they know I am going, they always want to come with. I usually take them, because with daycare in our house, the kids don't necessarily leave the house very often. I guess I will just have to have them stay home until I finish Christmas shopping.
Allison has had good infusions the last two weeks. Sorry about the delay in updating! She has been a little stuffy for the last two weeks, but is holding this cold off on her own so far! It has not progressed into a sinus or ear infection at this point! This is PROGRESS! Usually, as soon as she gets a cold, she gets an infections and the symtoms get really bad. She usually requires at least 10 days on an antibiotic to even start to get better. This one is VERY minor and while it has not completely gone away, it has not gotten any worse either!
We are still working on getting home infusions, Please pray that we make some progress with this! We will change Allison's infusion time at the Clinic to noon starting the first Wednesday in January. I know this will help Allison get through Wednesday's much easier!
Allison has her Church School Program on Sunday! She is very excited! This weekend will be filled with music! Ashley has her Central Dakota Children's Choir Christmas Concert on Friday and Saturday nights at 7:30 at the Belle Mehuse(sp?) Auditorium. She also has a practice Friday at 4pm. Ashley and Allison have Church School practice on Saturday at 1pm and the Program is Sunday afternoon at 1:30pm!
Well, I guess I will sign off for now, Please continue to pray for all of the babies! Thank you for continuing to check on Allison!
Love,
The Restemayer's
Wednesday, December 1, 2004 9:15 PM CST Hi! I hope everyone had a great Thanksgiving! Allison is doing great! The casts are OFF...Saturday, the 20th, I had a meeting in the morning and when I got home, Allison was sleeping. Allison woke up and came downstairs and said,"Look Mom! My casts are off!" Jim said that all he did was give them one good tug each and they slipped right off her arms! She is using her hands a lot, but they really don't look any different to me. Her pediatrition says that she still has some swelling, and that it could take quite a while for her fingers to go down in size. We are doing constant exercises with her fingers and hands, but the range of motion in her fingers does not seem much different to me. :( I guess with her having all 8 of her fingers undergo the trigger releases, I really thought they would look different when the casts came off. I need a little bit of patience I guess! Most of the stitches are gone now too. She only has two or three stitches left to dissolve.
Thanksgiving was a lot of fun. We had some friends and their kids over. Allison had a blast playing with her friend Hailey! They were standing on the bottom step, giving us a singing concert and letting us know if we did not clap as soon as they were done with their song! LOL
Allison had another great infusion today! She is barely sleeping anymore, even with the effects of the Benedryl! Today she slept from 8:45am and was up for the rest of the day by 9:15am. Not enough sleep!! Wednesday's get to be very long for my baby. She is usually up around 6am (sometimes earlier) she has her infusion from 8am to 1pm, then goes home to 8 daycare kids for the afternoon. She plays hard all afternoon, has a quick supper and goes to Church school from 6:15 to 7:15pm. Anyone who has a 3 year old can tell you how they are by 7pm if they have not had a nap, but then lets add Benedryl to the mix!
Alli LOVES church school and really looks forward to going. She does very well durring her class, and then the last 15 minutes are reserved for music. She knows that once they head to music, it is almost time to go home :( she starts crying EVERY TIME! Alli loves music and we hear whatever songs they sing there all week long, but Alli will never participate at the time. She usually ends up sitting in the back of the room with me, listening and crying because church school is over and she is tired.
We have been practicing "Jesus Loves Me" and "Twinkle Twinkle Little Star" for two weeks becaus her church school class is going to sing those two songs for the Christmas Program this year. Tonight in music, I ended up sitting with her class holding Alli the whole time just to get her to sing with the other kids in her class, She did sing once she calmed down and she had a great time too! Maybe next time, she will stand on her own, and I won't have to hold her the whole time!
We are planning on starting Allison's infusion at noon starting in January. I really hope this helps her make it through Wednesday's a little bit better. She should be feeling the major effects of Benedryl at her regular nap time, and maybe her schedule will not be thrown off on Wednesday's anymore!
Thank you all so much for checking on Allison. Please keep all of the babies in your prayers!
**I talked to Jenelle, Noah's mom, and Noah is doing a little bit better this week. He is supposed to go home tomorrow, but will need to be on a portable vent 24 hours a day. The doctors think that he will need the vent for the rest of his life. :( Please continue to pray for my little buddy Noah! Thank you!
Love,
The Restemayer's
Thursday, November 18, 2004 8:19 AM CST Allison had her 79th ifusion yesterday! Everything went great. Next week during her infusion she will get her casts off! We can hardly wait! It is still pretty hard to tell if there is a difference in her hands with the casts on. She has a limited mobility in her hands just from the casts. I hope that this will make a really big difference in the way Allison can move and use her hands!
I have talked to different Dr's at length about Allison's Lumbar Puncture pressure. We have decided to wait and watch Alli very closely for any signs of Hydrocephalus. Allison's LP # was 37, and it should be between 10 and 15. This would indicate that she could have high Intercranial Pressure (ICP). High ICP can have a lot of negative effects, but Allison does not show any other signs of Hydro at all.The only other option is to have a shunt placed in her head. A Shunt would relieve the pressure, but comes with a high risk of infection and numerous other potential problems. So for now we watch, wait and pray.
Thank you for checking on us! Please say an extra prayer for Evlines family as they lay thier ^^Angel^^ to rest this week. www.caringbridge.org/ky/evline
Love,
Jennifer
Sunday, November 7, 2004 11:49 AM CST The color of the week is PINK! Alli has two BRIGHT pink casts and Bright pink nails to match!
Allison's surgery went OK! Thank you everyone for all of the prayers this week! She did great and was put through a LOT, but is doing better than expected. We had her infusion Wednesday at Fairview, and after a lot of waiting, a lot of confusion at the infusion center, and the Aldurazyme being mixed wrong, she did get her infusion. We got to check into our hotel around 6:45pm.
Thursday we were in Pre-op at 5:30 am and Allison was put under around 7am. She had her MRI, which went very well, and it looks absolutely unchanged from last year! Great news! She had new ear tubes placed, just in time for winter! She had a Lumbar Puncture, her pressure was quite high...it was at a 37 when it should be between 10-15.What this means for Allison, I don't know for sure yet. Her Carpal Tunnel and Trigger release went fine. We were told in September that Allison had only a couple of trigger releases to have done, but it turns out that she had to have all 8 fingers done :( We were also told that she would have to wear a soft cast or braces on her hands, as you can see from the picture, she has two HARD casts!
OH well! I know she will adjust fast. She is already starting to do things with her hands again. She is able to pick up a sippy cup and take a drink, and she has still found a way to play with some toys! I am not sure how tomorrow will go when all of my daycare kids return! Allison misses her friends terribly, but I am not sure how I am going to keep her from hurting herself or being to hard on her hands with all of the kids around!
Thanks for checking!
Please visit Evlines sight and say an extra prayer for her, she is having a very hard time right now!
www.caringbridge.org/ky/evline
Wednesday, October 27, 2004 10:22 PM CDT HI! I have updated the pictures again so be sure to check them all out! The picture above is of 4 of the hurler kids at Tami Slawson's walk run Oct. 16th, 2004! Tami's fundraiser raised over $35,000 for the MPS Society's research and to help find treatment and ultimately a cure for ALL of our MPS children! GREAT JOB TAMI!!!! Thank you for all you do!
Allison's infusion went great today. We spent a big part of the day getting ready to go to MPLS for Allison's surgery. We will leave for Fairview on Tuesday, November 2nd, and Alli will have Carpal Tunnel Surgery on BOTH hands on Thursday, November 4th.
We have our first appointment on Wednesday morning. We see the Neurosurgon at 11am. He will do a quick check up and tell us more about the Lumbar Puncture. I have heard many different opinions as to what is considered a high Intercranial Pressure for MPS kids, so it will be interesting to hear what he has to say. We have requested the Lumbar puncture because so many kids with MPS have hydrocephalus which can cause degeneration of the brain as well as optic nerve damage that can lead to blindness. As long as Allison is going to be under sedation, I really think her ICP should be checked.
Wednesday at noon, Allison will get her next infusion of Aldurazyme at Fairview! We have never had an infusion anywhere besides MedCenter, so I hope Allison will be OK with the change. I chose NOT to skip her infusion! We don't want her to miss even ONE week!
Thursday, November 4th
We are scheduled to arrive in pre-op at 5:30am. Allison will be put under around 7am. The Lumbar Puncture will be the first procedure, next will be the MRI. Allison will then be evaluated by the ENT, a hearing test will be done and new ear tubes will be placed, Last but NOT least, the Orthopedic Dr. will do the carpal tunnel and trigger release on both hands. I have been told that Alli should be out of surgery around 11:30am if all goes well. Allison will be admitted to the hospital on Thursday for the night, and there is a physical therapy appointment set up for her on Friday. I hope to be able to take my baby home on Friday night. Please keep Alli in your prayers. I am very nervous. The surgery scares me to death, but I Do trust the team at Fairview...they know what they are doing and they know the risks and complications that MPS kids tend to have and are prepared for them. The aftermath of this surgery scares me just as much as the actual surgery. I have no idea what her recovery time will be. How long will it be before she is able to use her hands without pain?
I will update when I can!
Thursday, October 21, 2004 12:39 AM CDT ~~NEW PICTURES~~ 10-21-04
We are HOME from California, and we had the best time at Tami Slawson's MPS Walk/Run Fundraiser!
We flew out of ND on Friday at 7am and arrived in Ontario, CA at 11am California time! Allison did very well on both flights! When we got to the Ontario airport, we found out that Jessica was arriving about the same time! We got to share a shuttle to the hotel! Jess went with us to the mall that night, and helped me out with my kids most of the weekend! Thanks Jessica! Allison and Ashley loved all of the attention they got from Jessica!
Saturday was the walk-run. The Landons, Jessica, me and the girls were picked up at the hotel by a LIMO! Ashley was SO excited she could hardly stand it! She skipped all the way from our room to the lobby :) When we arrived at the park where the walk was held, it was like meeting old friends! We met Jennifer, Fred and Melanie Landon,my White, Julie Leighton, The Scott Family (& saw my friend Noah!!!) The Slawson gang, the Bennetts, the Frye family (The Jack Pack!) and so many other Wonderful people! It was so busy that I feel like I didn't get to spend nearly enough time talking to anyone, I enjoyed every second, I just wish it could have lasted longer!
The families that were staying at our hotel all went out for dinner together. We had the opportunity to sit and talk a little while longer :) After dinner, Ashley went swimming with the Landons and Alli went to BED! She was exhausted! I think Allison wore Jessica out and she went to go to bed too. Alicia Bennett came to our room and we got to talk for a few hours!!! Thank you Alicia, I had a great time talking to you, I hope we can do it again soon!
Sunday came too quickly...We spent the morning packing up our suitcase and getting ready to go home. Jessica came to our room to help me with the girls. Thank you Jessica for all of your help, We love you and were so happy to meet you face to face! Leaving was hard, but I hope we will get to see everyone again soon! I HOPE to be able to go again next year!
Allison had infusion # 74 yesterday and it went well!
Thank you for checking on my baby!
Love,
The REstemayer's
Thursday, October 7, 2004 10:08 AM CDT Good Morning! Sorry about the delay in updates. Allison had infusion #72 yesterday. She is doing great! We are planning to leave for California next Friday for Tami Slawson's walk/run! Ashley, Allison and I are going. I am getting really excited! It will be wonderful to meet families that we have become close to over the internet, and to see some of the families we met last year! We will Leave on Friday the 15th and return to ND on Sunday the 17th. Quick Trip! I will post pictures when we get back!
Allison started Church School a few weeks ago. I really wanted her to participate in something where I am not the one she has to listen to. She has become attatched to my hip lately! The first night went really well, I sat outside the door of her classroom looking in every 2 minutes LOL. The second night Allison was NOT feeling very well so we ended up taking her home. THe third night she did just fine with me sitting outside the door again. The FOURTH night. I decided that instead of sitting outside the door the WHOLE time, I would walk across the street to the YMCA and cancel Ashley's student membership that she had not used in almost a year. I was gone 25 minutes at the MOST! when I got back, I looked into her classroom, and Allison was NOT there. I asked where she was, and the teacher told me that she had gotten VERY upset and asked to call home. SHE told the teacher her phone number and they called Jim and asked him to come pick her up! What a Turkey! Oh well! I guess I just have to continue to sit outside her classroom door for a while!LOL
I hope everyone has a great week, and I will post when we get back from Sunny California! Thank you for checking on Alli!
Sunday, September 19, 2004 9:43 PM CDT ~*~*~*~New Pictures added 9-20-04~*~*~*~
SORRY about the lack of updates!!! It has taken me a while to get back into a "normal" (whatever that may be) mode! Overall, Allisons tests went well! Here is the run down of Sunday, Monday, and Tuesday:
Sunday, September 12th
6:30 pm Allison and I were to check in at Hennipin County Medical Center for Alli's Sleep study. Shortly after we arrived, the nurse came in and started to put all of the leads on Alli. (I will try to scan in a picture) My poor baby was attached to SO many wires, she could hardly move. After they were all on, the nuse said ALli could walk around or play a little before she went to bed, BUT Allison would NOT do anything besides watch some DVD's. I am SO glad I bought a few new movies for this trip :) Alli went to sleep a little after 9pm, and slept pretty well most of the night. With the exception of trying to pull off some of her wires!
They let us go Monday morning at about 7:30am, just enough time to take a shuttle back to the Hotel, pick up Jim and get to our first appointment of the day! I guess moms don't NEED showers.....
Monday, September 13th
8:00am Dr. Van Heest
Dr. Van Heest is an orthopedics Dr. who specializes in hands and Carpal Tunnel issues. Dr. Van Heest looked at Allisons hands and asked us a few questions, there was really nothing more to be done until Allison had an EMG to test for Carpal Tunnel. We scheduled an EMG for 11:00 that morning.
9:30am Back to HCMC we go!!!! We met with the Dr. who reveiwed Allison's sleep study. He had very positive things to tell us! Allison had an average of 3.9 events of apnea per hour. While this does not sound good, it is! Here is a quote from the Dr.'s write up: "This study was unremarkable with no evidence for significant obstuctive sleep apnea (Apnea-Hypopnea Index = 3.9 events/hour). All stages of sleep were observed."
11:00am EMG
This test was AWFUL!!! I did not know what was involved in an EMG. electrodes were placed on ALlison's hands and forearms, and she was shocked. Yes I said shocked. Electrically shocked. This was the worst test my baby has been through! It took about 45 minutes total. I can't tell you how many times I wanted to pick her up and leave. Unfortunately, I knew I couldn't. They were testing for nerve response in her fingers and hands. I know her hands are bad... but we really had no idea how bad. The results of the EMG shows that the nerves in her hands are VERY compressed. In some areas of her hands, there was no nerve response at all. Allison needs carpal tunnel surgery on both hands ASAP. We are working on scheduling her surgery for the first week in November. :(
12:00 Endocrinology
Allison has grown at a "better than normal" rate in this last year!!!!! YEAH!!! We need some labs drawn, but overall, the Dr. was very pleased!
1:00pm Echo/EKG
2:00pm Cardiology
Alli had a positive appointment with the cardiologis too! :) Alli has mild mitral valve thickening, and has a PR interval that is prolonged for her age. The PR interval has INCREASED over this las year which is not good, but for now, all we can do is monitor her closely and report any instances of extreme fatigue with a pulse below 100. We should also report if she has any episodes of fainting. Gee..I'm pretty sure I WILL report to the cardiologist if she faints!
The good news! As of last year, Alli had a mild left ventricular hypertrophy with a posterior wall of 7 and a septum of 9(mm?) This year....The posterior wall measured 5 and the septum measured 6mm!!! Her heart has actually gone DOWN in size!!!Thank you Aldurazyme! This was Amazing news! We were hoping that ERT would stop further accumulation in her body, but did not dare hope that it would get rid of some that was already there! WOW!
3:00pm Pulmonology
Alli's pulmonology Dr. was very happy with the chest x-ray! He said that it showed that her ribs are taking on a more "normal" shape...Not quite as flared as they were last year. He thinks that her body is stretching out and there is plenty of room for her lungs to fully expand and continue to grow! Allison has no pulmonary problems at this point!
3:30 we met breifly with Dr. Whitley. He thought that overall ALlison is looking great...All of the Dr.'s he had talked to about her were very pleased!!!!
4:00pm We met with Neuropsychology. Allison is still testing within the normal range for her developmental tests!!! Her lowest scores were in the motor skills section. I would attribute this to her lack of mobility in her hands due to the severe carpal tunnel. I will post more about her scores when I receive the actual test results! Dr. Shapiro said that Allison is "a normal child" despite her diagnosis and the prognosis that was given for her when she was diagnosed. This is WONDERFUL!
We Finally got back to the hotel at 4:30 pm. and I finally got a shower! Nothing like being at medical appointments for 22hours straight!
Tuesday, September 14th
Jim and I requested that Allison NOT be put under. We decided that since Alli needs the Carpal Tunnel surgery so soon, all of the other procedures could wait. There is no reason for her to be put under twice, especially with her high risk with the anesthetic.
Our only appointment for Tuesday was with another Orthopedic Dr. Allison had x-rays of her hips, knees and spine taken. Allison's spine is looking good! She has NO scoliosis, and has a very mild kyphosis (13 degrees). Dr. Schwender does not feel that she will have any issues with her spine!!!!! Her knees are a little knock kneed. Her right knee is at 4 degrees and her left knee is at 14 degrees. Dr. Schwender did not feel her knees will pose a problem for her either. Three year olds are typically a little knock kneed, and his hope is that it will correct as she grows, but even if it does not correct itself he does not feel it will get any worse. Allison's hips are going to need to be monitored closely....Her ball is not all the way in the hip socket. It is about half way out. As she grows, there is a 50/50 chance that it will either get pushed in, or that it will come out more...Hip surgery would be an option down the road if this continues to be an issue for Alli, but Hip surgery is very invasive and has a long recovery time, so Please help us pray that this does not become another one of the challenges she has to face!
I would like to thank everyone who helped us through this week!
Jerrod & Ingrid~ thank you for your hospitality for the weekend! It was so nice to get to spend time with the two of you!
Jessica~ Thank you for being here for me and for taking Ashley to do some fun special things on Friday while we took Alli to her appointments. Ashley had a great time, and felt so special to get to spend the whole day alone with you!
Aldinger's~ Thanks for having Ashley Sunday and Monday!!! She had a great time, and has not stopped talking about Haley yet! LOL She was asleep within an hour of getting back to the hotel!!!! I think you wore her out! LOL
Jane~ Thank you for the Build-a-bear idea!!! It was great to see you and your beautiful daughters, even if it was only for a few minutes! My girls LOVED Build-a-Bear! Thank you!!!
Finally, I have to say how nice it was to meet the Ries family! We got to see Tommy and Kaitlyn!! They are adorable! Susan~ Please email me when you get back from MPLS! I would love to talk to you some more!
I also ran into Anthony! aka tony the tiger! Anthony is SO cute!!! I saw the Cimarrusti family in an elevator at the hotel! We only had a chance to talk for a minute, but I was so thrilled to see them!
Thank you everyone for checking on Allison and for your thoughts and prayers as we went through this exhausting week! Please keep praying for our MPS babies everywhere!
Love,
Jennifer Restemayer
Saturday, September 11, 2004 10:26 PM CDT Hi! I have access to a computer! We are at Jerrod and Ingrid's house for the weekend! They have been wonderful hosts. They have put up with all 4 of us and taken us wherever we have wanted to go! Today we went to Build-a-bear!!!!! If you get a chance to take your kids to a Build-a-Bear Workshop...GO! Ashley and Allison had a BLAST they each got to pick their bear, stuff it, dress it and name it. I will post pictures when I get home.
Allison's appointments have gone OK so far. She saw the Nuerologist first on Friday, and everything went well there. Allison was bouncing off the walls ALL day though:(, which made it really difficult to keep her cooperative. She had a hearing test next. This did not go very well. I will know more after we meet with the ENT, but the test actually showed a moderate hearing loss. I am hoping that new ear tubes will help, but it sounds like there may be more to it than that.
Developmental testing was next. Allison acted like a typical three year old. She did really well for a while, then she just wanted to be done! I'm sure her scores will be pretty good again! I am excited to get the test results. After the 4 hours of developmental testing we just had a chest x-ray left. We got out of there a little earlier than we expected!
Alli has a sleep study Sunday night, and MANY more appointments on Monday. Tuesday, Allison has her MRI and Lumbar Puncture. Please keep her in your prayers! Thank you!
Love,
The Restemayer's
Wednesday, September 8, 2004 10:49 PM CDT Alli's infusion went well today! We are trying to get ready for our trip...we leave early tommorrow morning.. Here is the latest schedule of events!
Friday, September 10th:
8:00a Neurology Dr. Charnas
8:30a Audiology
9:00a Neuropsych Dr. Shapiro
Developmental testing
3:00p Chest x-ray
Sunday, September 12th
Overnight sleep study Dr. Mahowald
Monday, September, 13th
8:00a Orthopedics Dr. Van Heest
12:00n Endocrinology Dr. Ternand
1:30 Echo
2:20 Cardiology Dr. Braunlin
EKG
Tuesday, September 14th
7:00a Anesthesia
8:00a MRI of the brain and cervical spine
9:00a Lumbar Puncture
11:00a Orthopedics Dr. Schwender
I will try to keep you posted! We will leave Mpls on Tuesday and have to be ready to go to Allisons next infusion at 8am on Wednesday morning...I may not get a chance to update much until Thursday! Please keep us in your prayers for a safe trip and good results for Allisons tests! Thank you!
Thursday, September 2, 2004 1:38 PM CDT ~~~~~NEW PICTURES IN THE PHOTO ALBUM! ADDED 9-2-04~~~~~
OK! I have a schedule of appointments for next week!
Friday, September 10th
8:30a Audiology hearing test
9:00a ENT Dr. Rimmel
10:00a Anethesiologist
11:00a Endocrinologist Dr. Ternand
12:30p Allison gets put under to do her MRI
Monday, September 13th
8:15a Orthopaedics Dr. Vanheist (sp)
9:30a Developmental Testing Dr. Shapiro
1:30p echo/EKG/chest x-ray
2:30p Cardiology Dr. Braunlin
4:30p Nuerology Dr. Charnas
Tuesday, September 14th
8:30a Pulmonology Dr. Milla
9:30a Metabolics Dr. Whitley
11:00a Orthopaedics Dr. Schwender
***Possible sleep study on Sunday night.
I have a feeling we will be exhausted!
Allison had a good day yesterday. Her infusion went just fine! #67! Later in the afternoon, she really stuffed up :( and ran a low grade temp. She seems to be about the same so far today, but at least she isn't any worse! I hope all of this is gone by next week for our appoinments! I would really like to be able to stop at the Ronald McDonald house and see what it is like! BUT if ALli is sick, we will be NOWHERE near there! Please keep us in your prayers while we are in the cities. I always get so nervous about these appointments. I feel like there is another shoe yet to fall.
Thursday, August 26, 2004 10:05 PM CDT Allison's infusion #66 went very well! She slept for over 2 hours! WOW! Allison's health has been very good (knock on wood) all summer. She is VERY Active, and has not been complaining of pain lately.
We will be in Minneapolis from September 9th through the 15th for Allison Appointments. I am getting nervous! I will post a schedule of appointments as soon as I get one!
Today was the first day of school for Ashley, she is in 4th grade! I will post pictures as soon as I get them
Thank you for checking!
Wednesday, August 11, 2004 9:42 PM CDT *****Our Dear Friend Kaitlynn Marie Wellman passed away on Monday August 9th, 2004 at 4:47pm. Please remember her family in your prayers. We Love you Kaity!
www.caringbridge.org/in/kaitlynn
Allison had her infusion today. She is doing very well! I talked to her primary Doctor today about getting starting the process of getting us on HOME infusions! This would be wonderful!!!
I will update more about Alli next time. My heart is with the Wellman's right now. Today was Kaity's viewing, and Friday will be her funeral. Please say and extra prayer for Jessica, Brian, and Josh Wellman. I know Kaity is well again and is happy in Heaven, it is the ones who are left behind who hurt.
Thursday, August 5, 2004 9:04 AM CDT ***** Please Please say an extra prayer tonight for our dear friend Kaity Wellman. www.caringbridge.org/in/kaitlynn She is in the final stages of Hurler syndrome, and will be going home to heaven soon. She has touched our lives in a way she will never know. Kaity-bug WE LOVE YOU!
Good Morning! Allison's infusion went very well yesterday. She slept for almost 2 hours! That really helped pass the time! Poor baby was nervous that I would pullout her tubes again though :( When she woke up and had to go potty, I started to pick her up and she said,"WAIT mom! Be careful of my tubes!" I felt so bad! She even walked REALLY slow in the playroom and was very careful to watch where her tubes were. I think the whole experience of having her tube pulled out last week and having to take off the tegaderm and all the sticky tape, and reaccessing her port, was tramatic enough to make us all a little more careful!
Alli is doing really well! She has had a ton of energy, and is climbing all over everything! We have been at the park just about everyday, and she is even going down the BIG slides by herself! I hold my breath until I know she is safe, but I think that goes along with being a nuerotic mom :)
Have a great week!
Love,
The Restemayer's
Thursday, August 5, 2004 9:04 AM CDT ***** Please Please say an extra prayer tonight for our dear friend Kaity Wellman. www.caringbridge.org/in/kaitlynn She is in the final stages of Hurler syndrome, and will be going home to heaven soon. She has touched our lives in a way she will never know. Kaity-bug WE LOVE YOU!
Good Morning! Allison's infusion went very well yesterday. She slept for almost 2 hours! That really helped pass the time! Poor baby was nervous that I would pullout her tubes again though :( When she woke up and had to go potty, I started to pick her up and she said,"WAIT mom! Be careful of my tubes!" I felt so bad! She even walked REALLY slow in the playroom and was very careful to watch where her tubes were. I think the whole experience of having her tube pulled out last week and having to take off the tegaderm and all the sticky tape, and reaccessing her port, was tramatic enough to make us all a little more careful!
Alli is doing really well! She has had a ton of energy, and is climbing all over everything! We have been at the park just about everyday, and she is even going down the BIG slides by herself! I hold my breath until I know she is safe, but I think that goes along with being a nuerotic mom :)
Have a great week!
Love,
The Restemayer's
Wednesday, July 28, 2004 2:04 PM CDT Well I feel like a clod today. After Alli woke up from her nap during her infusion, she said she had to go potty. I was just going to carry her into the bathroom so we didn't have to put her shoes on. I went to pick her up and did not see that her tube was hooked under the leg of the IV pole. :( I got her about half way up when I realized it was pulling. Poor baby! When it pulled, the needle came half-way out of the port. We had to diconnect the tubes and take off all of the sicky tape and start over again. Alli had to have her port accessed all over again, this time without the numbing cream :( She did just fine, and barely flinched. She is fine and it was an accident, but MOM is NOT supposed to cause her pain!
Oh well, The rest of her infusion went fine, I am just supposed to watch her port site for a few days and make sure everything is fine.
Thanks for checking!
Love,
The Restemayer's
Please stop by Caterina's page and wish her well! She started transplant for MPS 1 this week!www.caringbridge.org/ny/caterinamarcus
Kaitlynn Wellman has a caringbridge site!! www.caringbridge.org/in/kaitlynn
Please stop in and see her!
Monday, July 26, 2004 12:38 AM CDT Hi! Sorry for the delay! Allison is doing pretty well. She is getting some sort of a cold or virus, she is all stuffy and sneezing and coughing, but otherwise is great! Her infusions have been going very well, Kock on wood!
We have been trying and trying to teach Allison to pedal, so she can "ride her bike" too! She is not quite there yet with her coordination :) She gets so frustrated unless we just push her on her bike. She doesn't want to push down on the pedals. I don't really know if this is a stregnth issue or if she is just not developmentally ready to pedal. Ashley took quite a while to teach to pedal too, so I'm not too worried about it, but Alli would sure like to be able to ride!
We had Ashley's birthday party the saturday before her birthday. She decided to have 3 friends come over and go to the movie, "Cinderella Story" with Hillary Duff. Then all the girls got to sleep over! SHe had a great night! THank you for all of the birthday wishes is the guestbook! She was excited to see them! I still can't believe she is 9!
Thank you for checking on us!
Please stop by Caterina's page and wish her well! She is starting transplant tomorrow!www.caringbridge.org/ny/caterinamarcus
Monday, July 19, 2004 12:14 AM CDT Happy Birthday to my Ashley!!!! Ashley is 9 years old today!
Thursday, July 15, 2004 10:00 PM CDT Hi! Allison had infusion # 60 on Wednesday! I had miss counted and my last post said the wrong number~ Sorry! Alli's infusion went just fine! She got to play with a little riding truck! She sat in the cab of the truck and drove up and down the hallway, which made it interesting for me chasing her with her IV pole! LOL She had a good time, but I bet she askes to play with that truck again every week!
I am so proud of my little one! She has not had a pull up on all week! Including on medicine day!!!!! She has had a couple minor accidents, but she is doing so well with the potty training! Still NO accidents at night!
I am starting to get nervous about our next trip to Fairview. It sounds like we will have a very full schedule including a sleep study over the weekend. I have a feeling that this trip will be harder on Alli then they have been in the past. We will be ther longer, have more appointments, and she is older and I think she will get frustrated more quickly. I really hope they can condense the appts into at least a day less. As of right now we will plan on being in MPLS September 9th - 14th.
Thank you for checking and Please keep praying for all of the babies! Sign the guestbook! It makes our day!
Love,
Jenn
Thursday, July 8, 2004 9:40 AM CDT Hello! We are still here, we have just had a very busy couple of weeks! Allison is doing very well, she had infusion #56 yesterday! She seems to be growing again! I love that! Her summer therapy schedule is going well, she has 4 different therapists that come to our house. Two come one week and the other two come the next week. She is finally adjusting to the new ladies!
Allison is out of pull-ups all together! She doesn't even need them at night anymore! YEAH ALLI! She still has some accidents but they are really minimal. Lately the only time she has accidents are when we go to the park (YUCK!) and occasionally on Medicine day.
Allison and I were in a car accident on Sunday July 4th! We were on our way to the Parade in Mandan, traffic was completely stopped on the Interstate. We were stopped and I watched another car comming at us WAY too fast! He hit us goin about 35-40 miles per hour! Thank God everyone was OK. I was so worried about Allison! She seemed fine, but her port is placed just below her left shoulder, right about where her car seat strap goes. I was very nervous that it had been jarred by the impact and would not work properly. I was so releived yesterday when her port worked just fine! Alli was not even sore from the accident! I AM SORE! Other than a big bump on my head and being a little sore, we came through this just fine. My car on the other hand, is not looking good.
I will try to update the pictures this week! Thanks for checking, and PLEASE sign the guestbook!
Love,
The Restemayer's
Thursday, June 24, 2004 9:30 AM CDT Allison is doing MUCH better! She did have a virus, and was sick on Wednesday and Thursday last week. She has not been complaining about her knees as much although she still tells me that the car hurts her back. :( She has been very active! She is walking to the park without having to be carried, climbing, jumping,& running! I am so happy she is feeling better!
Thank you to the nurses at Medcenter! We took Allison to the Amusement park and let her use the tickets that the Nurses gave her! She jumped in the "Jumping Bean" and rode the carosel MANY MANY times! She had a great time!
Jim took her to her infusion this week, so I don't have much to report. He said that she slept for about an hour, and otherwise it was uneventful.
We are planning a trip to the cities in the beginning of Sept. I hear that we will have to be there for 4or 5 days of appointments!
Dr. Emil Kakkis, the doctor who developed "Aldurazyme", is still working VERY hard to help our MPS children!! Her is an exerpt from an update on The Ryan Foundation's website! Very Exciting news!
"Treating the brain for children with MPS I to date has not been possible because of what scientists refer to as the Blood Brain Barrier (BBB), or the bodies mechanism for keeping foreign substances from the brain. The treatment drug called Aldurazyme, is administered to Ryan and many other children around the world in weekly IV infusions and works astonishingly well on the bodies of MPS I patients. However, when administered through the blood in the standard IV method, the drug is not able to cross the Blood Brain Barrier (BBB) and therefore does not treat the brain. Over time, an untreated brain in children with MPS I will most likely result in mental regression. Children also experience severe spinal cord compression, which usually results in paralysis. Recent laboratory data provided by the Kakkis Lab shows that tiny amounts of Aldurazyme when delivered in intrathecal injections (IT Injections are similar to a spinal tap) not only crosses the Blood Brain Barrier, but shows that it normalizes glycosaminoglycan storage in the brain, the material which causes brain damage in MPS I patients. The goal is that the IT injections will be needed only twice annually. In addition, the IT treatment has been shown to dramatically reduce spinal cord compression. Look for the data from this work to be published soon in the scientific journal, Molecular Genetics and Metabolism."
As always...Thank you so much for checking!
Love,
Jenn
Wednesday, June 16, 2004 9:16 PM CDT Well~ this week has been hard. Allison has been complaining a lot of pain in her knees, fingers and even some pain in her back when she is in the carseat. I HATE thinking that she is in pain. I try to take my daycare kids to the park every day. On Monday, Allison could not walk to the park. She would start to run and stop, double over and grab her knees and say, "Mom, My knees hurt!" Once we got to the park, she did not climb up ladders, or slide down slides. She just watched :( Motrin did help, but I keep wondering WHY SO SUDDENLY! she has never complained about pain before.
I am working on getting her seen ASAP by the Ortho at Fairview.
Alli had her infusion today! The actual infusion went just fine. I did talk to Alli's doctor about the joint pain. When her checked her out, he found that she has an ear infection! We get to start on Augmentin again. He also had labs run just to see if she has some sort of a virus or infection that would cause her to ache. The labs all came back fairly well, nothing to be concerned with. While Alli was getting her infusion, she started having diareaha (sp?) Her doctor felt we should take a sample and run it for rotovirus.....Thank goodness that came back negative! Whatever Allison has, she does not feel well at all! I had 9 children at my house today, AND while all 9 children were eating snack.....Allison vomitted all over the table! :( I ended up having to give her some anti-nausea medicine, and I HOPE she sleeps very well tonight and beets whatever this is! I will be doing laundry and washing chairs and floors! :)
As always, thank you for checking on my baby! I really means a lot! Please be sure to sign the guestbook so we know you were here!
Keep all of these sick children in your prayers!
Love,
Jenn
Monday, June 7, 2004 9:33 AM CDT Where does all the time go? Allison has been doing fairly well. She has another cold or sinus thing going on, but other than that she is great!
Last week was our first official week of summer vacation! As most of you know, I have an in-home daycare. We now have 10 kids! Most of the children that I am caring for right now are older, so at least we have some mobility. We have been spending as much time as possible outside!
I posted a couple of new pictures...The picture at the top of the page is of some new friends we met in Minneapolis for the symposium in May. Allison, Jessica, Maddy, and Julia were the MPS 1 children that were there! We were so thrilled to meet them and Alli had a blast playing with her new friends!
Have a great week and I will try to be better about updating on Wednesdays!
Love,
Jennifer
Wednesday, May 19, 2004 9:25 PM CDT Allison had infusion #52 today! One year of infusions! I am so proud of her! She has tolerated everything that has been thrown at her so well. She accepts medicine day as just a regular part of our week.
We have seen many little changes in Alli this year. Her Liver and Spleen have gone down in size, her hair texture is softening, her skin texture is changing, her energy level has soared! Most importantly, we have not seen ANY negative changes! Allison has either maintained or improved in every aspect of her health. I know that Enzyme Replacement Therapy is not a cure for MPS, but I feel that with the ERT, we are stopping the progression of this terrible disease. I also know that ERT does not cross the Blood Brain Barrier, but we pray that Allison will continue to develop normally. Most children with Hurler syndrome are developmentally delayed before the age of 2. Allison is 3, and learning more and more each day! We have just finished with another round of Developmental Testing, and she has scored within the average range for her age in all areas! Again! She is progressing developmentally just as she should. We are so thankful.
I would like to thank Dr. McDonough, Greta, Patty, Nicole, & Kandace for making Allison feel so special today! Allison's Doctor and all of the nurses threw Allison a little party today to celebrate one year on ERT! The picture above is Allison with all of them this afternoon!
Alli loves the Backpack, and has guarded it very carefully all day!
We Measured Alli today! She grew another 1/2 an inch!!! She is now in the 50th percentile for height for her age!!! YEAH ALLI! She has grown 3 1/2 inches this year!!
Please say a prayer tonight for all of our sick babies and thier families. They all go through so much......
And for all of the parents out there who have lost their precious angels.
Love,
Jennifer
Sunday, May 16, 2004 9:59 PM CDT Wow! What a weekend! We left for Mpls on Friday morning, and arrived around 3pm. Ashley and Allison were so excited about going to the waterpark that we HAD to get our suits on IMMEDIATELY! We swam for over and hour, and Alli was so cold she was purple and shivering :) but still did not want to get out of the water! We decided to check out the game room..After a ton of tokens were spent and a few tickets won, we finally got to go back to our room!
Friday night, we went to my sister-in-laws art show! I was so excited to see her work! I had never been to her studio before! She is WONDERFUL! I hope the rest of the weekend was a success for your show Ingrid! I know I enjoyed being there!
Saturday we were up bright and early to get ready for the Symposium. There were informative medical talks most of the morning, and they were great...but the highlight of our day was meeting some of the most wonderful Families!
We were lucky enough to meet Kris Klenke, The Moran Family, The White's, the Wigglesworth Family,the Hollands, and a lot of other wonderful people too! Allison fell in love with Maddy Wigglesworth! She wanted to be wherever "her friend Maddison" was. What a wonderful experience! I can't tell you how good it was to meet all of these people and get a chance to talk to them and ask questions FACE TO FACE!
I was lucky enough to get to take some pictures of Julia Moran, Maddy, Allison, and Jessica. I will get them developed as fast as I can and I will post them!
On Saturday night we wnt to stay with some friends in Andover. We got some great pictures of all of our kids together! Ashley and Allison were lucky enough make even more new friends this weekend! I posted some new pictures in the Photo Album...Check out how cute they are!
Well, We are finally home and I am exhausted! I hope you all had a great weekend!
Love,
The Restemayer's
Thursday, May 13, 2004 11:52 PM CDT HI~ I am trying to get all packed for our trip to Minneapolis tomorrow! We are planning on leaving first thing in the morning. I am so excited to go and meet some of you other families out there!
Allison's infusion went well this week! She will have her 52nd infusion next week and I will take some new pictures! Allison's pediatrition and her main nurse are planning a little party to celebrate one year on enzyme! They are GREAT!
I will update after we get back from the citites......I'm sure I will have lots to tell you! :)
Love,
Jennifer
Wednesday, May 5, 2004 3:59 PM CDT Today was Allison's 50th infusion! We are comming up on her one year anniversary of ERT! Allison slept a little extra today during her infusion and seems a little more sturdy this afternoon, not quite so tippy. I hope that her infusions continue to be this non-eventful!
We are looking forward to going to the World Symposium for Lysosomal Storage Disorders in MPLS on May 15th! There will be an MPS Patient Advocacy Meeting as well as plenty of time to talk to other MPS families! We will be staying at "The Depot" on Friday and Saturday nights. I am very excited but also a little bit nervous!
Please Please Please....say some extra prayers for Niki and Christoper. They are both in the PICU and NEED all of the prayers they can get!
www.caringbridge.org/il/niki
www.christopherjoseph.com
Visit their guestbook and leave their families a message of support.
Thank you,
Jennifer
Thursday, April 29, 2004 10:50 AM CDT Hi! I have been busy trying to get ready to go to the World Symposium in MPLS on May 15th. I am very excited to go but also a little nervous. Here is part of an email I received from Larry Kirch in case anyone needs the info and would like to go!
"There is a conference being held in Minneapolis from May 13-15 at "The Depot." The conference is billed as the WORLD Lysosomal Disease Research Network Annual Symposium. WORLD stands for The World Organization of Research on Lysosomal Diseases and as noted on the website it "is a consortium of healthcare professionals, clinics, and laboratories, working as networked centers of excellence in the care and treatment of patients with lysosomal diseases. As a coordinated group distributed over a wide geographic area, we are able to provide access to services and collaborative synergies that facilitate effective treatment and research."
On Saturday, May 15, the Symposium is free to Adult LSD patient/parents(if you attend the entire conference the fee is $100.00). The program for Saturday includes family/support group breakout workshops. Although the program is still a little undefined for this portion of the symposium, I wanted to make sure you knew about it if you are inclined to attend. Last year the National MPS Society created a "Regional Picnic" program and I thought that we might hold a luncheon sponsored by the Society's Family Assistance Program-Regional Picnic Program, on that Saturday (as lunch is on our own for the symposium). There is also the possibility (not confirmed yet) that Genzyme Corporation is providing lunch so either way, lunch can be provided. I can get an update in the next week or so."
Alli's infusion went well. She did not sleep very long yesterday though...she was so tired that by 6pm she was sleeping on the couch! Yesterday was her 49th ifusion!! WOW! She has not missed one since we started! I think she is doing GREAT!
Thank you for checking on our Allison. Please keep all of the sick children in your prayers. Especially our friend Niki. www.caringbridge.org/il/niki SHe is having such a hard time right now.
Love,
Jenn
Thursday, April 22, 2004 9:41 AM CDT Oh guys~ I know I haven't updated for a while...Sorry. Allison is doing fine.. She is very congested right now, but we are hoping that she will be able to fight this off without antibiotics. We will have to just wait and see. Her infusion went well yesterday, we were a little concerned because of how congested she is, but she seemed to hold her own just fine!
I have been on the phone with Fairview trying to coordinate Allison's next set of appts. We are trying to get the appts either the week of May 10th-14th, or May 17th-21st. Saturday May 15th there is a WORLD Symposium for Lysosomal Storage disorders in MPLS!! I would really like to go! There will be some breakout sessions for different disorders, including MPS! My hope is that we can get Allison's appts around this time to save us an extra trip to the cities.
Please continue to say some extra prayers for our friend Niki. She is still in the PICU. www.caringbridge.org/il/niki
Thank you for checking!
Love,
Jennifer
Thursday, April 8, 2004 10:27 PM CDT ~~~~Prayer Request~~~~
Tuesday: Niki a little girl going through BMT is in the PICU on a vent :( Please say an extra prayer for her tonight! www.caringbridge.org/il/niki
Alli's infusion went well again this week! It hardly even phases her anymore. She knows Wednesdays are her medicine days, and there is no negative reaction at all! It has just become part of her "normal" life.
I received a letter this week about Children's Special Health Services (CSHS) coverage of MPS! I am going to copy this letter and paste it on because there may be some other families reading who do not qualify for financial help for their medically needy child! I wrote a letter of request to CSHS last May, and MPS was added to the list of CSHS covered services on Feb 1st! It took some time and a lot of help from Allison's pediatrition, but it was worth it! If anyone has any questions please feel free to email me: jennmarie@bis.midco.net
Thanks for checking!
Love,
The Restemayer's
Here it is!
April 1, 2004
Jennifer Restemayer
2217 E. Capitol Ave.
Bismarck, ND 58501
Dear Jennifer:
I am pleased to let you know that effective February 1, 2004; Mucopolysaccharidosis (MPS) I (including variants) was added to the list of eligible conditions for the Children’s Special Health Services (CSHS) program. This decision was made upon the advice of the CSHS Medical Advisory Council. A handout that outlines general diagnostic and treatment services through CSHS is attached. Specific policies for MPS that CSHS will follow include:
Covered Diagnostic Services
-Biochemical blood tests
-DNA Testing
-Imaging Studies (CT scans, X-rays, etc.)
-Extended Developmental Testing with prior authorization
-Genetic Assessment and Counseling
-Subspecialty evaluations including ENT, Cardiology, Ophthalmology
Covered Treatment Services
-Therapies (PT, OT, Speech)
-ENT care (PE tubes, coverage for sinus and ear infections, tracheostomy if required)
-Surgical placement of port
Coverage of enzyme therapy and bone marrow transplant will be discussed at the upcoming Medical Advisory Council meeting scheduled for May 15, 2004.
Please feel free to share this information with others that might benefit. If you have any questions, you can contact me at (701) 328-2436.
Sincerely,
Tamara Gallup-Millner, RN, MPA
Unit Director
Children Special Health Services
Thursday, April 1, 2004 9:54 PM CST ~~~~~NEW PICTURES April 4th~~~~~
I hope everyone had a happy April Fool's Day!
Allison's infusion went very well this week! The last two weeks have been pretty rough so I was ready for anything! She slept a little, and watched a "Dora" video, and played in the playroom!
Jim and I celebrated our 9th wedding anniversary last week! It was so nice to have a sitter, and be able to go out just the two of us! I know we will be doing that more often!
Ashley had her conferences on Monday night. I am so proud of how well she is doing in school! She is very excited for summer to come! I had to tell her at least 10 time this morning that a tank top is not appropriate for school~ AND we live in North Dakota..it is still really cold in the morning! =)
Alli has been so excited to be able to be outside! She is running and jumping and CLIMBING! Jim built a playcenter in the back yard last summer, and Alli was not quite big enough or strong enough to climb up the ladder into the platform by herself. This year, after only two days of working on it, she has it mastered! I still hold my breath until she is safely on the platform, but I'm sure I will get used to her climbing soon too! =)
Today was almost 70 degrees! We were outside ALL day! Alli played in the sandbox, did sidewalk calk, blew bubbles and climbed up the playcenter at least 50 times! She went to sleep very easily tonight!
Thanks for checking on us!
Please say an extra prayer tonight for all of the babies!
Love,
Jennifer
Wednesday, March 24, 2004 8:56 PM CST ***Request*** I got a new computer..and I could not get my email address book to transfer over to my new computer! SO I have lost all of my contacts! Please email me so I can rebuild my address book! My email address is at the bottom of this page.
Thank you!
INFUSION # 44!
Alli got over her virus pretty quickly! Thank goodness!
Today was a LONG day! Allison's infusion went fine. She missed her Greta though! Alli usually has the same nurse every week. This week, her daughter was sick so Alli's nurse was not there. Greta..I hope she is feeling better! Thank you Nicole for helping Alli today! Alli had a quiet infusion today. She was very tired and we even saw a MAJOR fall on the floor screaming fit..but after she rested a little more, she was fine.
After her infusion, Allison has an appt with the opthamologist. She had to have her eyes dialated :( the drops they used to dialate her eyes are supposed to last 24 hours! :( The Opthamologist said that her eyes look about the same as last year! NO Worse, but maybe a tiny bit better! YEAH ALLI! The reason he said they may be a tiny bit better is this time he was able to see the Optic nerve...Last year he couldn't get a look at it! This may be because she is a year older and can follow directions better and is able to sit still for a longer period of time, but Maybe it Could be a slight improvement!
The actual Appointment went fine, it was just the aftermath of the appt that was hard for us. Allison's eyes are VERY dialated! It was very hard for her to see today. As I have mentioned, Alli gets a TON of energy after her infusions, She literally bounces off the walls. Her balance is never very good on Wednesdays because of the Benedryl. For lack of a better description, she acts tipsy drunk. Then today we added the dialtion of her eyes on top it all. Poor kid! She would RUN but she couldn't see very well. She stepped on a red wiffle ball at least three times and fell every time. She fell going up the stairs, down the stairs, over a crack in the driveway...you get the picture. She fell asleep out of frustration and sheer exhaustion around 6pm. When she woke up she kept saying that something was wrong with her eye :( I really hope she has an easier time tomorrow!
Thanks for checking!
Love,
the Restemayer's
Thursday, March 18, 2004 9:19 AM CST Well.. we had quite the day yesterday! Allison is back on Augmentin for her sinus's and she has been complaining of her ears. Her ears are too waxy to see clearly into but..she gets ear infections so easily that I tend to believe her when she says they hurt. Alli's infusion went fine until around 11am. Allison started having really yucky pants, and telling us her tummy hurt. She started to cry, so I picked her up and she threw up all over both of us! On Saturday, she ran a little temp and had one episode of vomit at the grocery store, but then was better and felt ok the rest of the weekend. It must have been some sort of a virus that she is still trying to fight. She seems to be doing fine today, but who knows! I thought she was fine yesterday morning too, and we both left the clinic in scrubs! LOL!
Hoping for a better day today!
Love,
The Restemayer's
Wednesday, March 10, 2004 2:04 PM CST Hi~ An update on Wednesday! WOW! Allison's infusion went well today. We measured her and weighed her today. She has GROWN! She is now 37inches tall and in the 49th percentile for height! YEAH ALLI! She has grown a total of 3 inches since she started ERT! This is AWESOME! She was stuck at 34 inches tall for about a year. She went from being above the 95th percentile in height at 14 months to the 21st percentile at 27 months. Now she is 37 months and at the 49th percentile~!!!
Thant all for now,
Thanks for checking, and please keep praying for all of our sick babies!
Love,
Jennifer
Thursday, March 4, 2004 10:52 AM CST ~~~~~New Pictures added March 4th!~~~~~
Infusion #41! Alli had a good day~ she is getting very used to being able to play in the playroom! She usually gets the cash register and pretend food ~ it is really cute!
I plan on trying to get Allison's Fairview visit rescheduled for sometime in April. I'm sure they will still want an MRI, Developmental testing, Ortho, Audiology& Cardiology. We will have an appointmetn with Dr. Peters & Dr. Whitley....and who knows what else we will pack in. I will keep you posted!
I received an email from Family Voices on the Family Opportunity Act. This contains a Medicaid buy-in program for medically needy indiviuals! Families that do NOT financially qualify for medicaid could get into the buy in program and get some help with those medical bills! This could help a lot of us! Please read the following email and if you can.. contact your Legislators!
FAMILY OPPORTUNITY ACT:
Measure Providing Medicaid For Disabled Children May Move
> House leaders are contemplating moving long-stalled
> legislation, allowing the families of children with severe
> disabilities to pay for Medicaid insurance, after lawmakers
> reached a compromise limiting the scope of the bill.
> The Family Opportunities Act, first introduced in 2000, would
> allow families whose income levels otherwise disqualified them
> for the state-federal Medicaid program supervised by states to
> get disabled children's coverage largely unavailable in the
> private market.
> The legislation was shelved at the end of 2002 after House
> Energy and Commerce Chairman Tauzin wanted to restructure it to
> allow private companies to provide such coverage under the State
> Children's Health Insurance Program instead of Medicaid.
> Now, staffers say a compromise -- that the bill's main
> sponsors, Senate Finance Chairman Grassley, Senate Health,
> Education, Labor and Pensions ranking member Edward Kennedy,
> D-Mass., and Reps. Pete Sessions, R-Texas, and Henry Waxman,
> D-Calif., agreed to -- is reviving interest in the bill. A
> Sessions staffer said the bill has "more momentum" than ever
> before.
> A spokesman for House Speaker Hastert said the speaker and
> Majority Leader DeLay are considering ways to move the bill. The
> two have talked to Sessions about it, but they have made no
> decisions yet, the spokesman said. Passing it as a suspension
> calendar bill is an option, he added.
> Under the compromise -- intended to pare down the bill to
> mollify critics who oppose expansion of public entitlement
> programs -- families whose incomes are below 250 percent of the
> poverty level may purchase coverage from the Medicaid program.
> Originally, the legislation allowed families earning up to 600
> percent of the poverty line to buy into Medicaid. The compromise
> also raised the amount Medicaid could charge eligible families,
> from 5 percent to 7.5 percent of the family's income. The
> funding for the legislation also would be discretionary, not
> mandatory as under the original bill.
> Without legislation, many families must divest assets and
> remain below the poverty line to qualify for Medicaid benefits,
> proponents of the bill say; or they may give up custody of their
> children to make them eligible for a program that allows
> disabled adults to buy into the Medicaid program.
The FOA's passage looks very hopeful. However, we have been told that it is "now or never." We need to the FOA passed before next year's budget is done. We have about two weeks! So let's have a really BIG effort from everyone to get it done. We need to get it on the calendar in the House.
What can you do to Help???
1) Continue calling and getting ALL the Representatives from your state to support the FOA.
2) Once they are cosponsoring the bill, ask your Representatives to contact Congressman Delay (R-TX) and request that the FOA be put on the calendar for floor debate.
Today and tomorrow are really important!!! There will be meetings with Mr. Delay tomorrow, so your calls will help!!! Please tell us what you and other families are told during these calls!!
Thanks for all your hard work on this bill!! Keep it up and maybe we will have a law to help families soon!!!
If you need help finding information about the Representatives from your
state, you can check this website: http://clerk.house.gov/members/index.php
Thanks for checking!
Love,
The Restemayers
Friday, February 27, 2004 10:40 AM CST "We become whatever our children need us to become, because we love them."
Amy Holland, MPS mom
Good Morning! Allison is doing very well. She had her 40th infusion this week! She STILL has her sinus infection... So we are back on Augmentin. We tried Zithromax last time hoping it would still do the job but not upset her tummy so much. Needless to say, it did not work, but it was easier on her tummy. It is so hard to get the potty training done when she has to be on Augmentin so often. It seems like we are just about done, and she is having many days in a row without accidents, then we start the Augmentin again and she just can't make it there in time. She gets such an upset tummy that she has diarreah(I know that is spelled wrong, but who really wants to know how to spell it? :) So, we are back in pull-ups.
Allison's new therapists have started coming! She will get an hour of speech and an hour of OT per week. I think it will take her some time to get used to the new faces, but they all seem ver nice!
Have a great week!
Love,
The Restemayer's
Friday, February 20, 2004 4:33 PM CST Sorry for the slow update...
We have a small peice of good news! Allison is getting a little more range of motion in her hands! Her OT came today and she did some measurements on Allisons shoulders,wrists and fingers. Compared to the last time they did the measurements, Alli has gained an average of 3 degrees in her middle knuckles on her fingers! Everything else was just about the same. BUT NO WORSE! Considering that the middle knuckle on your finger really affects what you can do with your hands, and this was the knuckle that she has the most limitations...I am very excited about this increase!
ERT went well on Wednesday. It has become very routine for us! I just hope it stays as uneventful as it has been!
Please remember all of our babies in your prayers! Thank you!
**New websites: www.caringbridge.org/ny/ashley
www.caringbridge.org/ky/evline
www.christopherjoseph.com
These are all MPS 1 babies. Ashley is going through transplant at Duke. Christopher is also going through transplant, but I'm not sure where. Evline is newly diagnosed and about to start ERT, maybe transplant later.
Sunday, February 15, 2004 10:37 PM CST I read something today that I just wanted to share. I found this in a guestbook entry on another childs page. I think I will print this out and put it somewhere that I will read it often! I know I worry about tommorrow too much!
There are two days in each week
about which we should not worry
two days which should be kept free
from fear and apprehension
One of these days is yesterday
with all it's mistakes and cares
its faults and blunders
its aches and pains
Yesterday has passed forever
beyond our control
all the money in the world
cannot bring back yesterday
we cannot undo a single act
we preformed
we cannot erase a single word
we said
Yesterday is gone forever
The other day we should not
worry about is tomorrow
with all its possible adversities
its burdens, its large promises
and its poor preformance
tomorrow is beyond
our immediate control
Tomorrow's sun will rise
either in splendor or
behind a mask of clouds
but it will rise
until it does
we have no stake in tomorrow
for it is yet to be born
That leaves only one day
Today
Anyboby can fight the battle
of just one day
it is when you and I add the burdens
of those two awful eternities
yesterday and tomorrow
that we break down
It is not the experience of today
that drives a person mad
it is the remorse or bitterness
of something which happened yesterday
and the dread of what tomorrow may bring
Let us therefore live one day at a time.
Wednesday, February 11, 2004 10:28 PM CST Happy Valentines Day! A little early:) Allison's infusion went well again today! So far so good! She has gotten very used to being able to play in the playroom during her treatments. She Loves the cash register and the play food!
Allison is still wearing panties, BIG news is that she has FINALLY pooped in the potty! I hope this trend continues!
Not much else is new here. I am very sick of ND winters! TOO much snow and way too many COLD days. By cold I mean with the high temperature of the day being below zero.
Alli is loving her " Jumping Bean" (Alli's name for it) She would jump all of the time if I would let her!
Thanks for checking!
Love,
Jennifer
Thursday, February 5, 2004 8:52 PM CST ~~~~~NEW PICTURES!~~~~~
Happy Birthday Allison! I can't believe she is three years old already! We had an all day party for Alli today! All of my daycare kids were here and we made Alli's favorite cookies this morning and played with water baloon yo-yo's. This afternoon we gave Alli her Jumping castle and all of the kids took turns for the majority of the afternoon! I had one TIRED baby tonight! She stayed in the jumping castle most of the afternoon ~ even when she was too tired to jump! Everytime we mentioned taking a break and going upstairs for a while, she CRIED! I think she had a wonderful day! I hope so!
Jim and I have planned on getting her some sort of inflatable jumping toy for quite a while. Allison has asked for one since we rented a big outdoor castle in July for Ashley's birthday party. She LOVES to jump! We thought the long cold North Dakota winters leave too much time indoors and not enough running and exercise for her. We have been told that the more active Allison stays, the better for her joints. Kids with MPS start to stiffen and loose Range of Motion in their joints.
We found a circular inflatable jump around with high walls and thought it would be perfect! There was room enough for two to jump and it held up to 125lbs. We were excited! We waited to set it up until last night....Poor Jim tried to use the vacuum cleaner as a blower, that didn't work...then he tried a bicycle pump, that did not work either....finally he just sat and blew up this six foot jumping toy...He had just finished the second section when he heard air leaking out! IT HAD A HOLE! It was 10:30pm the night before Alli's birthday. We had planned this big surprize for so long..we couldn't give up yet. So, I went to Wal-mart at midnight or so to see what they had. We ended up with something bigger than we origionally planned, but it came with an air compressor! YEAH! Anyway, the things we do so our kids will have the birthday that they dream of! It was a really fun day!
Please remeber to keep all of our MPS babies in your prayers!
Thanks for checking on us, it means a lot!
Love,
The Restemayers
Wednesday, January 28, 2004 8:39 PM CST Hello~
We did not leave for Fairview as scheduled today. There were two big reasons. Medicaid did not approve the trip, because they were never sent any records or paperwork from Fairview after our last trip in September. I called the office yesterday to confirm arrangements for this week and the Medicaid office said they had not received approval from the State office. :0 We Called around and just this morning figured out that we were denied for this trip because of paperwork!
Our second reason for not leaving today was the WEATHER! The temperature at noon today was -24 degrees! (Yes, that is 24 degrees below zero!) Last night it was 40 - 60 degrees below with the wind chill! The whole state of ND was in a Winter weather Advisory for the EXTREMELY cold temperatures and blowing snow. Bismarck had 9 inches of snow over the last 4 days and is expecting another 2 to 3 inches tonight! We were just not willing to risk the long drive and the dangerous road conditions. We will reschedule, but I am hoping we can wait until March. We were there in Sept. and March will be 6 months since she has been seen by the Dr.'s at Fairview. I hope to hear from Dr. Whitley tomorrow.
Allison's infusion went well. My mom has been here since Friday to help with daycare and was planning to stay with Ashley while we were gone. She went with us to Alli's infusion today.
Well, I think the stress of the last few weeks is catching up to me. With Alli's IEP meeting, Eligability Meeting for continued services,planning for our trip to Fairview..., and Allison's birthday comming up on Feb 5th.
Now I am going to relax, and just focus on Allison's third birthday and try to plan a really special day for her!
Thank you for checking on Alli!
Love,
The Restemayer's
Friday, January 23, 2004 9:21 PM CST I have been waiting to update until I had more details on Allison's appointments at Fairview. Well~ I still have not heard anything besides we need to be there by 8am on Thursday morning.
Alli's infusion went very well this week. She is getting to be a little bit more aware of her tubes. This is good because she can play in the playroom without scaring us too much! I am always afraid she will take off running and pull the line out of her port :0 ! Her nurse is wonderful about playing with her! I sure appreciate the break!
Our plan for next week is to leave Wednesday right after Allison's infusion. It is about a 7 1/2hour drive from Bismarck to our hotel in Mpls, depending on the traffic. I'm hoping that Alli will sleep at least part of the way! Keep your fingers crossed for us! Otherwise there will be a lot of Strawberry Shortcake and Barney movies playing!
I will update again if I learn more about where we are supposed to be and when. Otherwise, please keep Alli in your prayers as she is going to be put under for an MRI. I get so nervous about sedations. I know the risks our MPS babies have and I guess I have heard about too many complications. I know I will be a Basket case!
Love,
The Restemayers
Thursday, January 15, 2004 9:49 PM CST Sorry for the delay! Allison's infusion went very well on Wednesday. She even slept a little longer this time! I hope that trend continues!
We had Allison's IEP meeting today. I think it went very well. The transition process between Infant Development and Early Childhood services seems to be going pretty smooth! Allison will get Speech Therapy one hour per week and OT one hour per week. This is the same amount of time she was getting with the Infant program. She will continue with the home based services at least for now. YEAH! I really wanted the home based services. Dr. Shapiro thinks it is going to be important that everything stay about the same so there are not other factors impacting all of the developmental testing that is done on Alli, any change in routine could impact her development, and factor into her test results. As most of you know, MPS can affect cognative development, and if this happens we need to know IMMEDIATELY.
Everyone at the IEP meeting listened to me explain what I felt we needed to work on and were eager to learn more about what MPS has affected with Allison. This is all new territory for them. They have never provided services for anyone with this diagnosis before. I would really like to thank them for finding a way to keep Allison in the program and for their willingness to learn.
In other news, We are scheduled for appointments at Fairview on January 29th and 30th. It sounds like we will see : Dr. Whitley, Dr. Peters, Audiology, Cardiology, Nueropsychology, and have an MRI. I am hoping that we have most of the appts before the MRI, because Alli's R ear tube was clogged when we were there last. I think that it has since fallen out. If it has, while under the anethesia for the MRI, maybe they could replace the tube?! Then she would only have to be put under once. Another fun filled couple of days :) I have a feeling that we will be around the clinic most of the day on Thursday. I hope to run into some of you other families there! We usually stay at the Days Inn, if anyone would like to get together!
Oh~ I almost forgot! Alli is STILL in panties!!! She is doing very well! We have accidents but~ for the most part she keeps herself dry!
Thanks for checking and please keep praying for all of the sick babies!,
Love,
The Restemayers!
Thursday, January 8, 2004 2:30 PM CST ~~~NEW PICTURES ON 1-10-04!
Alli wore her Strawberry Shortcake panties ALL day without an accident!! YEAH ALLI! She also started sleeping in a Big Girl Bed this week!
Well~ Allison was DENIED. She will lose Medicaid as of Feb 5th. I went to this meeting knowing that this would be the outcome, but I am still very disappointed. The people who determine eligability did their job the best they could according to the criteria. It's the criteria that need to be changed. In order for Allison to qualify she would need to have functional limitations in three or more of the following areas:
1. Self-Care
2.Receptive and expressive language
3. Learning
4. Mobility
5. Self direction
6. Capacity for independant living
7. Economic sufficientcy
Here's the part that is off..They have to use the developmental testing to compare how she is doing with other three year olds and use only the capabilities that she has NOW. They can't take her diagnosis as a disability. The only diagnosis they take into account is a diagnosis or Mental retardation combined with an IQ score lower than 70. Alli's testing gave them an IQ score of 107. I am SO happy that she is doing so well, I guess I don't understand why her accomplishments should keep her from getting any help. Has anyone fought this fight before? Where do I go now? I can appeal, but the team followed the guidelines and answered them the only way they could. There was no gray area. The only thing that I could get out of an appeal is another denial and the chance that someone might review the guidelines.
Oh well,
The Restemayers
Monday, January 5, 2004 9:12 PM CST Christmas is finally over! We spent this last weekend in Grand Forks, ND; Cavalier, ND ; AND Crookston, MN!! My kids were spoiled by everyone! It was wonderful to see so many of our loved ones, but I am so HAPPY to be HOME~!
We had a good day today. I had a meeting with the staff from the Early Intervention Center. We were there to determine if Allison was eligable for continued therapies after she turns three. We went over all of the developmental testing that has been done in the last two months and she is doing very well. Alli does have significant limitations in her range of motion in her shoulders and hands, but still scored in the "normal" range for her fine motor and Gross motor skills. She scored very well in her speach testing and her cognative testing, again all within the "normal" range for her age.
There are some things that I can do to help her develop some of the skills she is not as strong in, such as playing play-doh more often and practicing squeezing and ringing things out. I did find a spray bottle that is small enough for her to grasp and squeeze the trigger! This is our new favorite bathtime toy! She sprays down all of the shower walls!
The best news of the day is that Allison will Continue her Therapies!!! It has been determined that she will have and IEP and will continue with her Speech and OT! I do not yet know if we will continue with the same routine or our time will be cut. I am pretty sure she will not receive more than she is getting now..but I am really hoping that she will get the same amount! We will have her IEP meeting next Thursday so I will let you know more then!
My next battle.... Allison's eligability meeting for D.D. Services. When Alli was first diagnosed, she qualified for D.D. services automatically due to the nature of MPS1. There is a D.D. waiver for children who qualify for these services, that also automatically qualifies them for MEDICAID! At age three, Social Services looks at the developmental testing that is done and uses it to determine how this child will be at age 6 and at age 12. If the testing is within normal range at three...they ASSuME that she will be normal at 6 and at 12yrs old. I HOPE AND PRAY THAT THEY ARE RIGHT! But.. With a child who has any sort of a progressive and degenerative disorder, how can they use the testing done at age 3 to determine how that child will be at 6?
Anyway, I have been told many many times that there is really no way Allison will qualify. For us, the biggest change will be the loss of Medicaid. :( I am having a really hard time with this because, there is no financial help for Allison in the state of ND at this time. Wish me luck! If Social Services determines that Allison will not be eligable, I will appeal the decision. I think I have a long road ahead of me. Allison is the only known case of MPS 1H in the state, and the only one on Aldurazyme! No one knows what MPS is or understands what it can do. There is no criteria for help for kids with progressive and degenerative disorders unless they have already deteriorated. Our Meeting with Social Services is on Thursday morning, so I will wait to update until after the meeting.
Thanks for checking!
The Restemayer's
Wednesday, December 31, 2003 3:03 PM CST Happy New Year!
New Years Eve is a time of reflection when we tend to look at all of the events of the last year and try to set some goals for the year ahead. 2003 was a rollercoaster ride for our family. We ended 2002 by praying and praying that Allison's test results would come back negative for MPS. We hoped that this nightmare would be over and that 2003 would be filled with relief. We could go back to our "normal" existance. January 8th, 2003 we officially got the news and Allison was diagnosed with MPS 1. Our lives were forever changed. Our baby had a genetic disorder that without treatment would cause her severe pain, and most likely kill her by age 10.
The next few months were filled with turmoil.We were faced with deciding on treatment for Allison. Bone Marrow Transplant was the only option at that time. Unfortunatley there are many risks associated with it. Enzyme Replacement Therapy sounded promising but was not yet available.(Aldurazyme was still in clinical trials) We chose to wait and see if Aldurazyme was passed by the FDA. We were painfully aware that the older Allison got, the more the MPS progressed and the risks associated with BMT grew. Each day was a challenge. One day, I could barely breathe and couldn't make it through an hour without crying. The next, I was doing as much research as I could and feeling hopeful that Aldurazyme would be passed by the FDA, and my beautiful little girl would have a chance at a much better life.
I started following some of the other MPS kids via their webpages. I have fallen in love with everyone of them and grieved every time one of them was called Home. I have had contact with some of the most amazing people I have ever come to know even though it has just been through the internet. The support they have provided to us has been amazing, some days it was the only thing that kept me sane. Thank you.
In May, Aldurazyme was passed by the FDA for treatment of MPS 1!! We started to prepare. Allison went through a multitude of testing and had surgery to place a port for her infusions! She had her first infusion on May 28th, 2003! Allison was getting the enzyme that she was missing.
Since May we have seen a lot of improvements with Allison. Thank God! She has continued to make progress in all developmental areas and is well within her age range for all of the developmental testing that has been done! She has grown 2 1/2inches since she started ERT, her Liver and Spleen are back to normal size, and she has had slight improvements in her range of motion in her shoulders!
Her infusions have all gone well with no major reations to date.
We have a lot to be thankful for. In 2003 we experienced every emotion imaginable. We have gone from complete devestation to hope. While I will always hate the diagnosis of MPS, I have a new understanding of the gift of life. I am thankful everyday for things I had always taken for granted. I pray that the upswing continues for 2004. Please continue to pray for all of the sick children. There are way too many of them.
There is anew website up for Niki, a 15 month old with MPS 1. www.caringbridge.org/il/niki
She was just diagnosed on Dec 5th. Please sign their guestbook and let them know they are not alone.
I would like to thank you all for your support and wish you health and happiness in 2004! Happy New Year!
Love,
The Restemayer's
Friday, December 26, 2003 10:36 AM CST I hope everyone had a Merry Christmas! We had a lot of fun!
Allison's infusion on Wednesday went very well. She was very crabby when she woke up from her nap, so I did have her take another nap when we got home. I'm glad she slept because, I don't think she would have made it through all of the festivities of Christmas Eve without it! My sister, Jessica, and my step-dad, Will came on Wednesday afternoon. We had dinner and then got to open presents! Jess and Will got Alli a Care Bear, and Allison was SO excited about it! She started opening the present and as soon as she could see what is was she started yelling! "It's a Care Bear!!!" I picked up two packages of panties for Alli, hoping that if she had new ones, she would take more of an interest in wearing them. She LOVED them and insisted on wearing some Strawberry Shortcake panties and her shirt for the rest of the night. She was jumping around showing all of us her panties! LOL It was too cute! Who would have thought that opening new underwear for Christmas would have been such a hit?
Ashley had a great night too! She loved all of her presents and had a great time with Grandpa Will and Aunt Jessica.
I hope you were all able to spend Christmas with people you love, and I hope you had a wonderful Holiday!
Love,
The Restemayers
Thursday, December 18, 2003 12:16 AM CST #30 ~ Alli had another good infusion. Our biggest worry right now is the flu! I pray she doesn't get it! There are SO many cases of influenza in Bismarck right now! Our Dr. recommended that we not take her shopping or out during peak times. I am ALL for that! We will be hermits for a while until this flu is dying out! There is a shortage of the flu shot AND some of the pharmacies have run out of the anti-viral medicine that is supposed to lessen the symptoms of influenza and shorten the duration. We did get a perscription for it and we did find some! So, if Alli does come down with influenza, we can start her on it and hopefully it will not be as severe.
Alli is going to have a hard time with not going out as much. We are home all day during the week because of daycare, and now we won't be running our errands or going to playland for a while. I need to find a way for her to get more indoor physical activity! I do have a slide that we cleaned up and brought in the house, but that gets a little old after a while. Any ideas? She needs to continue to move and climb and jump to help maintain and improve her range of motion. MPS buildup limits range of motion and that gets worse over time! The less activity she has, she could lose more range.
There is a new website for a 3 yr old boy, Cade, with MPS1. Cade is on Aldurazyme! www.caringbridge.org/il/cademateo
Please keep praying for these babies!
Love,
The Restemayers
Wednesday, December 10, 2003 9:02 PM CST Hi ~
Infusion # 29 went well. Alli has a bit of an ear infection though. I guess this is nothing new. She had a ton of drainage come out of her right ear a few days ago and has since been pulling at it. She didn't start to complain about her ear until yesterday. She has been up quite a bit at night though. I am NOT used to that anymore!
When she was really little, we had such a hard time getting her to sleep, she would wake up as soon as I put her down, or moved out of her reach. We spent quite a few nights sitting up in the recliner :) Later, I could get her to sleep but she still had to hold my hand through the crib rails for a LONG time, until she was sound asleep before I could leave the room. Then she had RSV. Needless to say, we didn't get much sleep that whole winter. Everytime she got a cold, after she was over the RSV, she would start to wheeze again. We bought the nebulizer that year.LOL Sleepless nights!~ I guess it was about a year or so ago that she finally got the bedtime routine. Ever since, (unless she is sick) she has gone to bed around 8:30pm and slept through the night until around 6am. I am spoiled now, and am not used to the endless nights anymore! Sorry ~ I got off track! :)
I have learned of a new little girl, Katilynn (MPS 1H) who is on ERT! Her website is: www.caringbridge.org/ky/katilynnsmom
They were diagnosed in September, and her website was just set up last week! Please stop by and help them feel a little less isolated.
I also have a special prayer request. Sami Slawson (MPS 1) is 12yrs old and having major trouble with her feet! Here is a quote from Tami (her Mom) about what is going on with Sami.
"In 2002, Sami developed small bumps on the bottom of both feet. At first the doctors didn’t think any thing was wrong. Well by September 2002, the bumps had grown to grape size tumors. They diagnosed them as Juvenile plantar fibromatosis. In October 2002, she had surgery to remove them. This was the worst surgery I have ever seen! Her feet did not heal right and she spend 4 months in a wheelchair, unable to put any weight or pressure on her feet. She then had to learn to walk again. It was a very long recovery. Well, after recovering we noticed that she was developing small bumps again. We were hoping that with the start of enzyme that maybe they would stop growing or maybe go away altogether. Not true.. They are getting bigger every day. In fact, we were just at the doctors 2 weeks ago and I thought she had only 3 tumors on just one of her feet. I was hoping that the little bumps on her other foot were just scar tissue. Well she now has 2 grape size tumors on the other foot too. Poor baby. Sami is one in a million, actually, one in a billion. She is the only child with MPS, Perrie Robin Syndrome (cleft palate), and Juvenile Fibromatosis. She will be in the medical books for years to come. To have one of them is rare, to have all three is unheard of!!!! That’s my baby! She has to do every bigger and better than everyone else! LOL" Slawson's website is : www.caringbridge.org/ca/slawson
Please pray that the Dr's can find an alternative to surgery!
Thanks for checking!
Love,
The Restemayer's
Friday, December 5, 2003 11:57 PM CST ~~~~~NEW PICTURES ADDED ON 12-07-03~~~~~
I am finally updating!!!! Sorry it took so long, time just flys! Allison had another good infusion on Wednesday. She did not sleep as long as I would have liked, but Oh well! Alli has been watching 'Barney's Christmas Star' over and over again, so when I didn't bring it to her infusion...She was MAD! Instead I had gone through the old videos and found Barneys 'Waiting for Santa' from 1993! It was my little sister Katies! Thank you Wendee and Katie! Katie had given it to Ashley when she was two or so. Anyway~ it was a hit and now the only video she wants to watch is 'Waiting for Santa'! Soon I will be hiding that one too :)
Allison has been so funny! She is talking NON-STOP! Today, she told me "Mommy I am MAD!" and went and sat herself down in the time-out spot. LOL After a few seconds, she looked at me and had a huge grin on her face and said, "I'm HAPPY now Mom!" and she was off playing again. She is obsessed with emotions! She always wants to know if we are happy, sad, or mad. If we tell her we are sad or mad, she will hold our cheeks and give us a great big kiss, then she will ask if we are happy now! She thinks that a kiss from her will make everything better ~ and ~ you know~ it sure does help!
We have some of the results from her developmental testing. They all look great! Yeah Alli! She is developing right on track!
As Alli turns 3, she starts to transition between Infant development programs to preschool programs. Because Allison is doing so well developmentally, as of her third birthday~ Feb 5th ~ she will no longer qualify for her waivered services. From what I understand, the school system will deliver some of her therapies, but she will also loose the Medicaid waiver :( It is so hard for me to understand why there is no help for families who have a child with a progressive and degenerative disorder,but is NOT developmentally Delayed, and do not meet the financial limitations to qualify for Medical Assistance ( $32,000/year for a family of four) Major Medical need should be taken into consideration somewhere!!!
Changes need to be made!
Have a great week!
The Restemayer's
Friday, November 28, 2003 12:22 AM CST I hope everyone had a very happy Thanksgiving! We were very thankful this year that we are all here together. My mom and sister came for Thanksgiving dinner! We had a mellow, but nice day. Ashley and Allison had a lot of fun playing with their Nana and Aunt Jessica.
It has been a hard week for those of us following other MPS babies through their websites. We lost two precious boys this week. Tommy Bennett became an Angel on Tuesday morning at 3:10 am. www.caringbridge.org/ca/bennettboys
Max Ciacciarelli (Mighty-Max) became an Angel Wednesday morning around 10am. www.mighty-max.com
I am absolutely heartbroken for these families, both of whom have given us support through Alli's guestbook. Please take the time to write some words of support to them.
Allison's infusion went very smoothly on Wednesday. Her SATs stayed between 95-98%, pretty good! She is still congested in her chest, but better than last week. Alli is almost done with her antibiotics..I really hope that she clears up the rest of that congestion quick! I would hate for her to start getting worse again.
Our friend Sophie (MPS1)could use some extra prayers right now as she is fighting a nasty virus! She is undergoing a transplant, and needs all positive thoughts she can get to help her fight it off! www.melroseroad.co.uk/
Thank you!
The Restemayer's
Wednesday, November 19, 2003 8:35 PM CST ~~PRAYER REQUEST~~ 11-23-03
Tommy Bennett and Max Ciccarelli NEED your prayers today. Tommy has MPS III and is undergoing his third transplant. www.caringbridge.org/ca/bennettboys
Max has been on the vent for over a month and really need some positive energy sent his way! www.mighty-max.com
Allison has been getting infusions of Aldurazyme for 6 months!!! # 26 today!
Alli had a little trouble keeping her SATs up while she was sleeping, during her infusion. They went as low as 89! Not a good thing. She had oxygen brought in and the nurse had it blowing towards her face. It seemed to help a little but her SATs where still not where we wanted them to be. As soon as she woke up and sat up, they went up to between 95 - 97 gain. We have all had a nasty virus that has been going around this week. Alli has not had it as bad but is still congested. We think the upper airway congestion combined with the infusion is what made her SATs drop so low. The Dr. ordered chest x-rays and an x-ray of her sinuses just to make sure there was nothing else going on. The x-rays came back pretty clear. Thank Goodness!! We have added another antibiotic, Zythromax, to the Augmentin she is already on, and hopefully this will prevent any further infections for the time being.
Please say an extra prayer for our Hurler friend mighty Max! He is stable, but still having a hard time.
Love,
The Restemayers
Thursday, November 13, 2003 3:55 PM CST ***Please pray for Mattie's family. Mattie was taken off life support at 8:00pm on Thursday night. Her kidneys and her Liver were failing and there was nothing more they could do.
www.caringbridge.org/nc/mattie_east
Good Afternoon!
Infusion # 25 went well! I wouldn't know the # if Dr. McDonough didn't tell me every week! He walks into the room and says "Its # (Whatever) this week right?" Alli has a sinus infection, but otherwise has been healthy. She started Augmentin again on Friday. We have been very lucky to be in and out of there so fast. It feels like a really long day..but when I think about it, we leave our house at 7:45am and are home by 1:15pm. I know of families that have to add and hour or two travel time to and from the hospital. We live 5minutes away, maybe 10min if there is ALOT of traffic.
Allison has had develpomental testing done this week. She has had quite a few preschool teachers out to work with her and try to get an idea of how she is doing so when she turns three, we can HOPEFULLY continue services! We NEED to be able to continue OT and Speech. I will post again when I find out the results but everything sounds very positive so far!
Ashley has been doing very well! We had her school conferences last week and she did a great job in school for the first quarter! She has been busy trying to get ready for some choir performances. She will be singing with the Central Dakota Children's Choir at the Kirkwood mall on Sunday Nov. 16th! They will be between JCPenney and Target if anyone wants to come and listen! Poor baby has had hives since Saturday! They seem to be getting better but still have not completely gone away! Ashley is allergic to dogs. She has not had a reaction in over a year so I didn't premedicate her when we went to a friends house who has a dog. She seemed fine all evening, but when we got home she had hives on her arms and legs. They spread to everywhere! Benedryl didn't do the trick as well this time. I hope they are completely gone by the time of her concert! I would hate to have her up there scratching! :)
Thanks for checking! Keep praying for all of the sick kids!
Love,
The Restemayer's
Wednesday, November 5, 2003 9:32 PM CST Hi~
Alli had her 24th infusion of Aldurazyme today! Yeah Alli!
She slept for less than an hour :0 which made for a very crabby toddler for the rest of the day!
I got the results of an Antibody test that was done the beginning of October. Allison tested positive for antibodys to laronidase (Aldurazyme). From what I have read and been told, 91% of the patients on Aldurazyme test positive for antibodies at some point. The clinical significance of the antibodies is not known, but the patients in the clinical trials who tested positive for antibodies, seemed to have no negative affect. I'm not too worried about this but we will definately be sure to continue giving Allison the Benedryl before her infusions to help prevent a reaction and we won't be able to speed up the infusion process anytime soon.
Allison has her balance back after her fall. I swear that baby needs to STOP climbing so much! By Friday evening, she was running and climbing again! Halloween was a lot of fun, but it was COLD! It was 17 degrees by 7pm on Halloween night. Alli loved trick-or-treating! She thought it was great to knock on someones door and have them give her candy! After several of the houses I would ask her if she was cold, she said yes, then I would ask if she wanted to go home...She said,"NO, More Candy!" She only went to 7 or 8 houses but she sure got a lot of candy! So far the favorite has been the M&M's! I put pictures of the girls on the Photo album page, Check them out!
Prayers are needed:
Please say some extra prayers for our Mighty-Max, he is doing better but is still one very sick little boy. www.mighty-max.com
There is a little girl in NC with Hurlers who is also fighting for her life. Mattie is in the PICU with a Very dangerous virus.
www.caringbridge.org/nc/mattie_east/
Tommy Bennett is undergoing his third transplant for MPS III
he is also having some trouble right now. www.caringbridge.org/ca/bennettboys/
Thanks,
Jenn
Wednesday, October 29, 2003 9:10 PM CST ~~~HALLOWEEN PICTURES ADDED!~~~~ 11-1-03
I am not sure where to start with Allison's update tonight. Yesterday morning, Allison fell off the top of the Little Tykes picnic table, landed on the top of her head then fell onto her stomach. I was in the room, but didn't see her fall, I picked her up immediately. She was totally limp. I knew within seconds that this was not right. She has another concussion. Yesterday she could barely stand or walk because her balance was so off. Today she is doing better but is not back to herself yet.
We are just two weeks shy of the date last year when Allison fell off the couch (my little climber!) and had a concussion. This was the day our whole nightmare started. This was the day that a so-called doctor sent us home with a photocopy of the PDR with worst case scenario Hurlers syndrome. It said bedridden by 8 and dead by 10years old.
This doctor told us without any testing....that Alli had "strange"facial features and had Hurlers syndrome..He was so proud of his discovery that he went to get some of the other Dr.'s to show off what he had found.
Allison acted exactly the same yesterday as she did last year. It was like reliving that horrible day. My child has got to stop climbing and falling! I can't relive that day ever again. I just can't do it.
Alli has more balance tonight, and as long as she continues to improve, we are just supposed to watch her. If she doesn't have her balance back completely in the next few days we will go in for a head CT.
On a better note... I had the opportunity to speak at a training for County Social workers and Care Coordination Staff today! How I managed to talk at all is still a mystery...I am NOT a public speaker! There were more people there than I thought would be, but it seemed to go pretty well. I enjoyed answering questions and was a little excited that they were interested enough about our situation to ask. One question was..If there was advice I could give them that would help them better serve families. I told them that if I could ask all of them for one thing it would be to LISTEN. Parents know what their child needs and know what will help them the most. I have often felt that people hear Allison's diagnosis, read a little about what it is, then come to my house with a ton of assumtions about our needs and about Allison's condition that are not accurate. I hope they heard me and will try to make less assumtions with other families! I am happy that I had the chance to talk to them, and I hope I will have the chance again!
Allison's infusion went very well today. She slept for just over an hour, and was VERY ready for bedtime tonight!
Please continue your prayers for mighty-max! His situation is very serious right now and he needs all of the prayers he can get! He is so strong, and I hope that our prayer will help him stay strong! www.mighty-max.com
Thank you for checking on us!
Love,
The Restemayers
Monday, October 20, 2003 9:46 PM CDT THURSDAY: Our friend Mighty Max was put on the vent for the FOURTH time this morning. PLEASE SAY AND EXTRA PRAYER FOR MAX AND HIS FAMILY.
www.mighty-max.com
NEW PICTURES FROM THE WALK IN cALIFORNIA!
~The California fires are VERY close to the park where the fundraiser was held, which is VERY close to Tami Slawson's house! Please pray that the fires can be contained and put out soon!
California was Great! Alli and I flew out on Friday afternoon and arrived in Ontario, CA at 6:10 local time.(8:10 central time) Alli did fairly well on the flight. She thought it was "cool" the first time we started going UP but got pretty tired of traveling by the time we got onto the second flight. We had about an hour layover in Denver, I thought we would have time to get something for Alli for supper there...I was wrong! We barely had time to get to our next gate! When we got there, they had already begun loading the plane!
Tami's walk/run was Amazing! I now see why it takes a whole year to plan a fundraiser like this! She had 100 runners, and who knows how many walkers! It was a zoo! AND it was 100 degrees outside! I met so many wonderful families! All of the MPS parents were given Gold colored t-shirts to wear, that was a great way for us to identify each other! Alli was a ham of course! :) She drew attention to herself all afternoon! She stuck close by some of the older brothers and sisters and had a GREAT time! She is still talking about Heather and Connor!
It was so nice to finally meet Tami in person! I hope we get a chance to get together again, when we have more time to visit~!
Talking to Dr. Kakkis was really interesting! He has been working on a way to get enzyme to the brain which all of the MPS parents know is imperative. I pray that he is very successful!(and soon!) He is a wonderful man! He has dedicated so much of his life to finding a treatment for MPS 1. I hope he knows what a difference he has and is still making in our lives. I tried to tell him, but there just are no words.
I turned in the first roll of my film tonight and I will get them back by the end of the week, I will post some pictures as soon as I get them!
We are very happy to be home, but so thankful that we were able to go and meet the families at the picnic. All of the MPS parents that I have had contact with wether by email, guestbook entries, or meeting them in person, have been so supportive. I never would have guessed that in that dark hole after diagnosis, a whole community of supporters would emerge. Thank you. You have all touched my heart, and my thoughts and prayers are with every one of you.
Thursday, October 16, 2003 9:20 PM CDT We are Leaving for California tomorrow! I am very excited but also a little nervous. I know the walk/run will be Wonderful! I'm sure I will be overwhelmed by all of the supporters of MPS and all of the awareness this walk/run will raise. Most of the people I know had never heard of Mucopolysaccharidosis before Allison was diagnosed. I feel like I know so many families affected with MPS but really, I know them through websites. I have only met one MPS parent face to face. I'm not sure how I will react when there is actually a group of affected families in the same place. I have so many questions, most of them cannot be answered, but it will be nice to talk to these parents and know that we have the same questions and frustrations.
Allison had another uneventful infusion yesterday. This is exactly how we like it! Her ears are looking better, and they should not pose a problem on our flight. The only precaution we need to take is to give her some tylenol an hour before we take off. I plan on bringing some snacks and juice to help her keep swallowing while the plane is taking off and landing.
I will update again when I get back and let you know how everything went. I plan on taking a lot of pictures so I hope to put some in the Photo section shortly after we get home!
We leave Bismarck at 3:30 pm tomorrow and arrive in CA at 6:13pm their time. (They are two hours behind)
We leave CA at 6:10am on Sunday and will arrive back in Bismarck at 1:16pm.
Okay my Fargo/Moorhead friends... I have a request. Friday,
October 17th. (Yes! This weekend) There is a benefit being held at Playmakers Sports Bar for some friends of ours. Blair and Nicole Aasland, and two daughters Kaitlyn and Elyssa. Kaitlyn and Elyssa have both been diagnosed with Epilepsy. Please stop in and support them, it sounds like they have had a really hard time of it.
Thanks
Love,
The Restemayer's
Monday, October 13, 2003 10:14 AM CDT I am trying to update AGAIN! The Caringbridge server has been down, so I have not been able to update!
Alli did very well last Wednesday. She does however have some fluid in her ears, which for her is the start of an ear infection. She is on Augmentin again. :( Augmentin has such a terrible effect on her little tummy, but it is the antibiotic that seems to work best for her. Alli's dr mentioned trying to do a typmanogram next week to see if her tube in the right ear has become unclogged. I HOPE it has cleared!
Alli and I are getting ready to go to California for Tami Slawsons walk/run! We will leave on Friday and come home on Sunday. It will be a quick trip but packed with activities! I am very ecxited to meet Tami face to face and meet some of the other CA families! There will also be a patient and family conference on Aldurazyme! I am looking forward to hearing about progress that is being made in these kids on ERT!
I will try to update again before we leave!
Thank you for checking! Please remember to keep all of these precious children in your prayers!
Love,
The Restemayer's
Thursday, October 2, 2003 12:31 AM CDT Ashley was my HERO for the day yesterday! We were all upstairs getting ready for Alli's infusion, when Alli went to her room to get her blanket. Alli must have dropped her blanket near the top of the stairs. I looked out of the bathroom to see Alli bending over to pick up her blanket and loose her balance. :0 I could not get there in time... She fell head over heals down the stairs! Ashley was on her way up the stairs at the time and LUCKILY put her hands out and stopped Alli from falling! YEAH ASHLEY! Alli did one sommersault and was stopped by Ashley before she fell down more than three steps. WHEW! Alli cried quite a bit but not from being hurt, she was just really scared! I was too!
Alli's infusion went really well again yesterday! I sure wish she would sleep like she did the first couple of infusions, but Oh well. We find things to do. Alli's nurses are wonderful and will help me try to keep her busy. I really appreciate them! There is not much new news to tell! Alli is doing really well! Physically, she is better than ever before. She has not been on Antibiotics for months! No sinus or ear infections, no respitory infections! (knock on wood)! I have been talking to the Early Childhood Intervention team and it looks like Allison will be able to keep her Speach and Occupational Therapies after she turns three! That is VERY important for her, she is at a very high risk for developmental delays, and we NEED to track her development very closely. Speach Therapy and Occupational therapy will only help her continue to grow and learn as she should!
I will be going to California on October 17th for Tami Slawsons walk/run fundraiser for the MPS Society! If anyone would like to sponser me...Please let me know! I will be back home on the 19th and I promise to post pictures!
Thank you for your continued support! Please keep praying for all of our MPS babies! Also, Please pray that the research to cross the Blood Brain Barrier with the enzyme continues to go well! Once the Blood Brain Barrier is crossed succesfully for humans, there will be hope for MANY different deseases!
Love,
Jenn
Thursday, September 25, 2003 9:42 PM CDT Alli's infusion on Wednesday went very well. She did't cry at all! She slept for about an hour and we kept busy the rest of the time playing with Play-dough, coloring and using stickers on coloring pages. Alli has made a lot of progress on Aldurazyme! I love seeing the changes!
I wanted to thank some people who helped make our trip to the Cities much easier. Thank you to my mom for taking over my daycare for two days, Thank you to Karen, my mother-in-law, for helping so much with Ashley. Ashley didn't have to go to one doctors appointment with us! I know she was very happy about that! Thank you to Jerrod and Ingrid for taking Ashley to the Mall of America for the day on Thursday! She had a GREAT time! Also, Thank you for having Ashley in your wedding, it meant a lot to her to be a part of your special day! Thank you to my sister, Jessica, for comming to see us at the Hotel and taking Ashley shopping at her favorite store....Old Navy. Alli looks SO cute in her new outfit that her Aunt Jessica bought for her.
Please, everyone say some extra prayers for all of the MPS babies.
Thank you,
The Restemayer's
Tuesday, September 23, 2003 10:23 AM CDT A good nights sleep can do wonders! Last night I was finally able to sleep without nightmares. I have been thinking.(UH-OH!) :) Every moment since Allison's fall in November 2002, has led us to Enzyme Replacement Therapy. If Allison had been diagnosed earlier in life, without a doubt we would have done a Bone Marrow Transplant. It would have been our only option. If Allison was being affected developmentally, again BMT would have been our choice. When we went to Fairview the first time in January 2003, The Genetic Specialist that we saw mentioned that Genzyme, a pharmacutical(SP?) company was working on an enzyme replacement therapy. My research started from there. I learned as much as I could about MPS 1, and the progression of the disease. I not an expert by any means, but everything that I have read says that typically if a child has a nueropathic form of MPS, without treatment,they are very noticibly developmentally delayed by the age of two (24 months). There are also kids that are slightly affeced developmentally. They tend to have some learning disabilities but are still on within the "normal" range in development.
I also read about the clinical trial for Aldurazyme, and most of these kids have had a dramatic increase in their quality of life since starting Aldurazyme. I talked to a mom who has three children in the clinical trials, and she stressed that her children were not without their problems, but were basically enjoying a normal childhood. When Aldurazyme was passed by the FDA in April 2003, we felt in our hearts that this was the way we could help our baby have a better life. This was going to help her.
This last week has made us question our decision a little, but ultimately we have looked at Allison and we see all of the progress that she is making on a daily basis. She is learning so much! We also see the difference ERT has made so far for her, and it has only been 16 weeks! We also know that she continues to grow and learn just like any other "normal" two year old. Her developmental testing this week shows us that she is still well within her age range for her development. She has progressed right along her learning curve!
Of course, we will contiue to monitor her very closely, and we will continue to hope and pray that Allison stays well. I ask for your prayers for Allison too, PLEASE!
I still have the same beautiful little girl as I did before we went to Fairview, and we are standing by our decision to put her on Aldurazyme.
NOW......... More exciting news. Allison and I will be flying to California in October! We have the opportunity to be a part of Tami Slawson's walk run, AND after the walk/run....We will attend a conference for patients and families of children on Aldurazyme!!! I know a surprize guest will be there! and I am VERY EXCITED about talking to other families who are using ERT. I think this is exactly what I need.
Thank you for checking, and please keep praying!
Love,
The Restemayers
Monday, September 22, 2003 10:05 AM CDT I am So happy to be HOME~! I have added new pictures of Alli SWINGING by her arms at the park, but did not figure out how to have more than one picture per slot. I will keep trying though. :)
I am going to need at least a week to recover from all of the chaos! Alli had a Ton of appts over the two days we were at Fairview. She continues to be a mystery to the doctors. She is doing great developmentally and has improved physically! The biggest concern for Allison at this point is ... Her Gene Mutation Analysis would indicate that she has the Gene Mutation for severe Hurler's Syndrome. No one knows why she is doing so well. If she has Hurler's Syndrome, according to most of the research, by the age of 2 she should have had marked developmental delays as well as MANY more physical and orthopedic problems than she does. Before the results of the Gene Mutation Analysis, everyone thought she would fall into the Hurler-Scheie catagory. Which would mean that she had a very good chance at having a NON-NUEROPATHIC type of MPS 1.
Now, the doctors think she may have a better chance at being affected developmentally.
Honestly, I value the opinions of the Dr's we have seen, but Allison is on the right track. I really feel in my gut that we are doing the right thing for her. We will continue to monitor her very closely, and should her development start to slow, then I guess we will have to make a decision then reguarding BMT. I just can't see changing her treatment now. She is doing SO well. She has improved so much. I pray that she continues to grow and learn just like she has always done!
Needless to say I am absolutley exhausted. I really had high hopes for our appointments. I really thought the doctors would be impressed with the results we have seen, and instead they barely looked at Allison, and didn't talk to her except to say "HI". Every one of them felt the need to explain worse case scenario "Hurlers" and make sure we knew what her Gene Mutation would indicate, but no one could explain why she is doing so well and her development is well within normal range at the age of 31months if she has a classic case of "Hurlers"
I promise to update more about our trip once I recover and am able to breathe again.
Love,
Jennifer
Thursday, September 11, 2003 12:48 AM CDT I HAVE NEW PICTURES BUT WANT TO PUT MORE THAN THREE ON THE PHOTO ALBUM...HOW DO I PUT MULTIPLE PICTURES IN ONE PICTURE SLOT? Please email me and let me know!!! Thanks, J
Allison's infusion went very well again yesterday! Alli cried a little right away when we got there, but calmed down after her port was accessed. Her ears are still infection free! Yeah! They did a blood test to see if Alli has developed any antibodies to the Aldurazyme, and I will let you know as soon as I get the results.
We will be leaving on Wednesday right after Allison's next infusion so it may be a while before I update again. We will be staying at the University Days Inn on the 17th and 18th. Our schedule for Fairview looks like this:
Thursday Sept. 18th
8:00am - Nuerophychology (Developmental testing)
11:00am - Dr. Peters BMT clinic
1:30pm - Timpanogram Audiology clinic
Friday Sept. 19th
10:00am - Dr. Milla - Pulmonary
11:00am - Dr. Whitley
1:00pm - Echo
2:00pm - Dr. Braunlin - Cardiology
After our two days of appointments, we will switch Hotels and stay at the Fairfield Inn. We will be going to Jim's brother's Wedding! Jerrod and Ingrid will be married on Saturday, September 20th! We are expecting to be home on Sunday night.
Thank you everyone for your prayers and for checking on my baby! Please continue to remember all of these children in your prayers. Give your kids and extra hug or two!
Love,
The Restemayer's
Thursday, September 4, 2003 10:22 AM CDT TUESDAY: A.J. Toivola passed away at 1:17pm today. Please visit his sight and let his family know we are thinking of them. A.J. and his mom Deb touched me and gave me courage just by meeting them, at a time when I didn't think I had any courage left. Thank you Deb and ^A.J.^
Good Morning!
Allison's infusion went very well again yesterday. I am happy to report that there is not much to tell you! :) I have noticed that her teeth are really getting bigger! This means that more of the swelling in her gums has gone down! This has helped her chew MUCH better. I have to say though that I really wish she would stop grinding her teeth! She grinds her teeth when she is awake, never when she sleeps. I don't know why she grinds them but the back teeth are up a little bit further that the front, maybe this has something to so with it.
Allison is still as active as ever. She Loves to go to the park and SLIDE! She has started grabbing onto a bar over her head and pulling her feet up so she can SWING by her arms! This is Wonderful to see! Alli has always had a limited range of motion in her shoulders and has not been able to stretch her arms up over her head. Her arms still do not go straight up above her head, but... being able to grab a bar over her head, and then supporting all of her weight with her arms while she swings herself is a HUGE improvement! I will try to get a picture of her swinging so you can see what I mean!
Thanks for checking!
Love,
The Restemayer's
P.S. I have a special prayer request! We met a wonderful family at Fairview in May. A.J. Toivola is a three year old boy diagnosed with Liver Cancer. He was in surgery at the same time Alli was in surgery to place her port. A.J.'s Cancer is spreading and he is VERY VERY sick right now. www.caringbridge.org/mn/ajtoivola/
Max Ciacciarelli, diagnosed with MPS 1 is undergoing transplant and is also Very sick right now.
www.mighty-max.com
The Power of Prayer is amazing, Please say a prayer for A.J. and Max.
Thank you!
Friday, August 29, 2003 9:42 AM CDT ~NEW PICTURES~
Wednesday's infusion went very well. What a hectic day though! Alli's infusion started late because it was Ashley's first day of third grade! Allison wasn't done until almost 2pm today. She slept just a little over and hour again and kept me very busy reading books and watching Barney the rest of the time. I am actually looking forward to going to Fairview this time. I want to see what the Dr's think of her progress on Aldurazyme!
Ashley started third grade! She was really nervous about school this year because most of her good freinds are in a different class! She does have one of her friends in her class and I kept telling her she would make more and she could play with the others at recess, but that doesn't make much difference to an 8 year old. All she knows is that most of her good freinds are together in another class and she is afraid of being left out. Now that she has been in school a couple of days, she realizes that she does still see the other girls at recess, and is much more relaxed!
Thanks for checking!
Love,
The Restemayer's
Friday, August 22, 2003 10:05 AM CDT Sorry about the delay in updating! I was sent a virus via email! I was lucky because my email blocked the attatchment BUT I haven't been able to use my computer until I ran an anti-virus program to make sure my computer was fine. I don't think the virus got sent to those of you in my address book BUT I apologize if it did.
Allison's infusion went very well again this week! I asked her nurse if we could measure her and weigh her again just because I really thought she seems taller lately! I was right! She is now 35 1/2 inches tall! In March of this year, she was in the 27th percentile for height on the growth chart and now she is at the 40th percentile!!!!! Yeah Alli! Many of you know that with MPS 1 growth is something that is affected. It is really really good to see Allison growing! She slept for her usual hour and a half or so, then we worked on her Barney flashcards. She is getting really good at recognizing her shapes! She is having some trouble distiguishing between the square and the rectangle, but I think she is doing just great for being just 30 months old! She knows the circle, triangle, heart, diamond, star, and she usually knows the square.
It sounds like we will be at Fairview on Sept. 18th for a whole bunch of appts! We will see Dr. Whitley, Dr. Peters, Dr. Shipiro(SP?), a cardiologist, Dr. Charnas the nuerologist, and a pulmonologist. I also hope to get a chance to see our Regional person from Genzyme! We haven't had a chance to see her since Allisons first infusion. Please wish us luck! I am really excited for all of the Dr.'s to see the progress that Allison has made since she started the Aldurazyme! I really think they will be surprized!
Love,
The Restemayer's
Thursday, August 14, 2003 8:02 PM CDT ~~~By the way! Alli peed on the potty SIX TIMES today!!!!! Yeah Alli!
Sorry for the SLOW update! Alli's infusion went very well yesterday. She slept for about an hour and a half. She cried when I gave her Tylenol but not when Greta accessed her port! :) She really has accepted these infusions as part of her routine.Alli did NOT run a low grade temperature this time! I hope this will be the end of the temps!
It has been SO HOT here! Today it was 101 degrees! They are predicting more of the same for tommorrow. It is almost too hot to have the kids outside if they are not in the water! We turned on the sprinkler system in the backyard and just let all the the daycare kids run! They had a great time!
As some of you may have read in the guestbook, I turn 30 years old this weekend! I'm am not sure how it is possible, I used to think 30 was SO OLD! I know I don't feel like I am that old! :)
Thank you for checking!
Love,
The Restemayer's
Saturday, August 9, 2003 9:28 PM CDT OK. I have a question for all of the BMT families out there! I was wondering if any of your children have gotten to a "normal" GAG level after Transplant? I got an email from Dr. Whitley yesterday, and here is some of what he had to say:
"The most recent urine GAG levels I reported to you were around 200. These levels are still somewhat above the "normal" range which, for a 2-year-old child, is around 100. The "normal" range varies with age. Frankly, I do not know if children with MPS I truly reach "normal" levels, or not. In the early days of bone marrow transplantation, I found that levels often stayed somewhat above the normal range during the first year after engraftment, but eventually declined into the normal range after that. I am not certain about the response to Aldurazyme, but this is an interesting and important question."
Dr. Whitley also mentioned a heart beat irregularity that must have been picked up on the Halter Monitor that Allison had to wear home after her port surgery.
Dr. Whitley writes, "From my view, Allison had relatively "good" reports. However, there were a few things that merit regular follow-up. I am especially concerned about her heart beat irregularity, i.e., "block". This is not an immediate concern if it stays the same. However, most people with an electrical "block" of the heart rhythm mechanism tend to get worse over time, and eventually have symptoms. I do not know if Aldurazyme therapy would help this, or not."
I know I will be asking Dr. McDonough about this but if anyone has any information for me ...again I would welcome it!
Well, I guess my daughter has surprised the Dr's up at Fairview..
"Frankly, those of us who have evaluated her here in Minneapolis have been somewhat perplexed about her condition. While many aspects of her condition are somewhat "mild"(e.g., her psychometric testing is relatively "normal"), other aspects are more typical of true, severe Hurler syndrome. Importantly, the results of her "mutation analysis" (the DNA sequencing of her alpha-L-iduronidase gene) show that she has Q70X mutations which would predict a more "classic" or "severe" form of MPS I"
It sounds like we will be making a trip to Fairview a little sooner than we had planned. I will try to schedule it for mid September, so we can combine the trip for the Appts at Fairview and our already scheduled trip to Mpls for Jim's brother's wedding. I have been so encouraged by the progress Allison has made since she started the Aldurazyme, but I guess I have to accept that the road we are being led down will be full of bumps. I just really don't want to hear any bad news. I just pray that Alli's heart is OK. She is doing so very well right now. I need that to continue!
Thanks for checking!
Love,
The Restemayer's
Wednesday, August 6, 2003 10:27 PM CDT ***** I have some GAG levels from some of her urine tests! The GAG levels are levels measured in urine, that in MPS kids are extremely high, and is part of how the doctors diagnose the different types of MPS. On May 28th 2003, just hours before her first infusion, her GAG levels were at 4,917.0 mg. On July 9th, her levels were at 211.9 mg. Can you Believe the difference?!? I am still trying to find out what "normal" levels are, and I will let you know more as I find out but, This has to be about a 95 percent reduction for her and I am SO happy about it! Aldurazyme is working for her! Her enzyme is doing its job and preventing further build-up!
Another infusion down! Allison only cried for a second right before the needle went into the port. She watched the "Water" being put into her line (the heparin, benedryl, and saline) and then went to her room to play and watch Barney. The Benedryl still hits her pretty hard and fast! She gets very crabby about 10 minutes after it is put into her tubes. She was asleep before Barney was over and slept until 10:20. Her body must adjust to the Benedryl so it does not make her sleep as long anymore :( Again today, like clockwork, Allison ran a low grade temp around noon, but it was back to normal by 12:30pm. I pray that this is the only reaction she will have! I can handle a low grade temp for a half and hour once a week!
My baby has gone NON-STOP today! As soon as we got home, she wanted to go to the park. We packed up all the kids and I took them to the school park for an hour and a half! After the park we had to fill the little pool so the kids could get a little wet. They played in the backyard for another hour before they were ready for a break. Allison fell asleep as soon as she stopped moving. She slept from 4:30 to 5:15, Then we left for Jim's company picnic.
The picnic was at Seratoma Park and Alli was most excited about the SLIDE! After playing so hard all day today I would have thought she would be tired, but she still had enough energy to go over to the amusement park and jump in the "Jumping Bean" 4 separate turns! As soon as her time was up she would ask for more tickets so she could go again!
(Thank you Greta for the tickets! Alli had a blast!) When we ran out of tickets, she threw herself on the ground and CRIED! She cried most of the way home asking for more tickets and more "BEAN". (That is what she calls the Jumping Bean) By the time we got home it was almost 9pm! This is already past her bedtime. I am exhausted, but I have to say it is a very good tired.
I am so thankful that Allison is getting these infusions, they are helping my baby to feel better. I know how lucky she is, how lucky we are. I couldn't ask for more than for Allison to be happy and to feel good! Thank you God!
Love,
The Restemayer's
Thursday, July 31, 2003 9:41 AM CDT Good Morning! I hope everyone had a good week! We have been very busy just trying to keep up with a very active two year old! :)
Allison's infusion went very well again yesterday. I would like to thank the Medcenter One staff for all of the help! Dr. McDonough has been great and Alli's nurses, Greta and Patti are wonderful! They both help me a lot with trying to keep Allison entertained while we are there. Trust me, I need all the help I can get!
Alli ran a low grade temp again yesterday around noon. Otherwise she has had NO adverse reactions to the Aldurazyme. We continue to see small improvements in Allison. Her range of motion seems to be improving! She has an easier time reaching up to grab things and it seems to be getting easier for her to lift her left leg to climb up on things. Her right leg has been her dominate leg and until this last month she was never able to lift her left one to step up on the ladders.
***Please say an extra prayer today for Tommy Bennett. He is about to undergo his THIRD transplant and is very sick.
www.caringbridge.org/ca/bennettboys The Bennetts strength and courage is amazing. All three of their children have MPS III. Tommy is the only one of the three that qualified for a BMT. He has endured two transplants that have failed, and is about to go through another.
Thank you!
The Restemayer's
Wednesday, July 23, 2003 10:35 PM CDT ~NEW PICTURES~ 7-26-03
Allison is so good about going to the clinic to get her "Medicine" She knows exactly what is going to go on. When we put the numbing cream on her port sight, she is already telling us that she is going to the Dr. and is getting her "medicine...Yeah!" then her smile turns iinto a frown and she says "owie". We tell her that the owie will be quick then we will watch Barney and take a nap. She gets excited about watching Barney and is fine! All the way to the clinic, she says "doctor" "Medicine" "YEAH" I try to be excited about going, so she thinks of this as a good thing! It seems to be working.
Alli only cried when the needle was put into the port. She fell asleep shortly after Barney was over at 8:30am and slept until 10:45am. Allison has been running a low grade temp around 12noon the last couple of infusions. I hope she is not going to have a reaction. The temp has not gotten above 100 degrees so as of now it is nothing to really worry about. We have just noticed the trend. Noon is about when the tylenol she gets in the morning before the infusion wears off.
Today instead of "TWINKLE", Alli practiced singing the "ABC'S"... Same tune, and you have to listen really close to figure out which she is singing:)
Thank you for continuing to check on Allison!
Love,
The Restemayer's
Sunday, July 20, 2003 11:58 AM CDT ~NEW PICTURES~
Ashley is 8 years old!!! I can hardly believe it! We ended up having 9 kids for the party, thank goodness all 15 didn't come! I know we had all we could handle with 9.
We rented a jumping castle to set up in the backyard, it was a lot of fun! The kids were all red faced, hot, tired and thirsty by the time they got out of the castle. It was 102 degrees yesterday!
Allison jumped and jumped and jumped! It was so funny to watch her! She did not want to get out of the castle at all! I think her little legs are tired this morning because when Ashley and the two friends that spent the night started jumping again at 8:30 this morning, Alli HAD to get in but she just sat on her butt to bounce. She was down for her nap by 11 this morning! My poor tired baby!
That is all for now, I am tired too! Thanks for checking!
Love,
The Restemayers
Wednesday, July 16, 2003 9:45 PM CDT Allison had her 8th infusion this week! She only slept for and hour or so which made for a LONG day! She hardly cried again today! She is doing so well! She was so tired by 4pm that she fell asleep on the floor for a few minutes. Allison and I worked on her alphabet puzzle, watched "Barney", and she sang "Twinkle Twinkle Little Star" at leat 15 times! After her infusion today, everywhere that Alli went....she RAN, and everything that Alli said....she SCREAMED! She was so wound up all afternoon! If only I had that much energy!
I have noticed some small changes in Allison the last few weeks. Her hair seems to be softer. She has always had thick course strands of hair, now, it seems to be almost whispy around her face. The skin on her arms and legs has always seemed to have goosebumps. No one thought that the goosebumps on her skin had anything to do with MPS, they just thought she had rough skin and it probably ran in the family. BUT her legs have lost the goosebumps and feel almost smooth! Her arms are starting to get better too! I have also notices that Alli's skin is not as thick. She has always had pudgy wrists that were so pudgy, they were hard. Her wrists are softer. ALLI IS GETTING SQUISHY~! This is COOL!
Ashley is looking forward to her BIG birthday party! She turns 8 on Saturday and will have her party on Saturday evening. We are expecting around 15 kids. (HELP!) I know they will have a great time! I will take some pictures with the digital camera and try to post them on Sunday if we survive! :)
I learned this week that right now, Allison is the youngest patient on Aldurazyme in the US! I thought that was a great peice of trivia! Thanks Tami for sharing the news! I also hear that she won't be the youngest for long. There is a 7 month old out there somewhere that will be starting soon! I wish this baby luck! I know you will do very well!
Thank you for continuing to check on us! It means so much! Please continue to pray for all of the MPS kids out there. There are many going through BMT, or still recovering from a BMT, the kids on Aldurazyme and those who are in a clinical trial for another Enzyme Replacement Therapy. There are also kids still waiting for a treatment for the type of MPS that they have, and there are so many...too many who are now angels. My heart goes out to all of these families.
Wednesday, July 9, 2003 11:18 PM CDT ~NEW PICTURES~ ADDED 07-09-03!
Hi!
Allison is such a trooper! She is already adjusting to the infusions! When we arrived at the hospital, she kept pointing to her port and telling me "Medicine" she knew what we were going to do and handled it very well. She cried a little when the nurse put Alli! the needle in the port but as soon as it was done, she was just fine. We went into "Allison's Room" and watched 'Barney'. Allison fell asleep as soon as 'Barney' was over (9am) and slept until 11:45am! I love it when she sleeps through most of her infusion, because there is less time to try to keep her entertained in a small space connected to a short I.V. Allison is a very active two year old and has no concept of going slow or being careful not to tear out her tubes!
We have SEVEN infusions down! Yeah
I have officially recieved a letter appointing me to the Children's Special Health Services Family Advisory Council to serve a two-year term beginning in August of 2003! I am very excited about this opportunity, I just hope I can help! Of course, I am already working on a letter requesting that MPS be added to the Medical Condition List covered by Children's Special Health Services! :) Wish me luck!
I HOPE EVERYONE HAD A GREAT FOURTH OF JULY!
Love,
The Restemayer's
Thursday, July 3, 2003 10:17 AM CDT Sorry about the update delay. I was just too tired to update last night! Allison hardly cried at all yesterday! Ashley went with us and I think that helped a lot! Alli wanted to show Ashley everything in the room! She was so busy looking around to make sure Ashley was still there that I think it really took her mind off of the nurse accessing her port.
Allison slept for THREE hours of the infusion! I thought that was great! Allison hasn't had any adverse reactions to the Aldurazyme, Knock on wood! Ashley was BORED! Ashley had a Dr's appt at 9am yesterday. Her Tonsils have been really big for about 6 or 7 months. We scheduled an appt with and ENT for August and it sounds like she may need her tonsils taken out. :( Ashley also made two trips down to the cafeteria and a couple of walk around trips. She thought it was torture to have to sit there in a dark room with the TV so quiet we could hardly hear it, while Allison slept. I kept trying to tell her that the infusion is much easier on her if Alli is sleeping! I'm glad that Ash came with us this time, I think it is important that she get a visual picture of what we are doing every Wednesday.
I saw the 60 minutesII special last night called "Saving Ryan". Ryan Dant was diagnosed with MPS 1 at the age of three. It was mainly about Ryan's family who raised a million dollars doing fundraisers and gave the money to Dr. Emil Kakis(SP?) for his research of Aldurazyme. The Dant family sounds absolutely amazing! They took the diagnosis of this devestating disease, and somehow got up enough courage and strength to get past the diagnosis and find hope and help. The special was really nice. I had a really hard time watching it though. Most of the time I can remain pretty upbeat. BUT.. faced with the realities of MPS...it gets hard to breathe. Is this something that gets easier with time or will I have the urge to crawl into bed and cry everytime I am faced with what MPS can do. I get so ANGRY and feel so helpless at the same time. Sorry.
Overall we had a pretty good day yesterday, Allison's infusion went very well, she is getting the enzyme, and we have seen some results! I just have to focus on how well she is doing and not think about what could have been or fear what could come.
Thanks,
The Restemayer's
Wednesday, June 25, 2003 9:33 PM CDT
****Please visit www.caringbridge.org/nc/koumpourasboys
and offer this family your support. They are from Greece and have two sons with MPS 3, (Sanfillipo). This family is living every parents worst nightmare. They have lost both of thier sons in the last 4 weeks. Hermes passed away on Weds. and Aristophanis passed away just three weeks before.****
Great news! The Dr. thinks that Allison's Liver and Spleen are already very close to normal size! I can't believe how much her stomach has gone down! NEW PICTURES!! I took some today just so you could see her belly now!
Alli does have an ear infection :( but hopefully this one will go away with the first round of antibiotics and not stick around for months. Allisons pulse was high all through her infusion today. We think it was because of the ear infection. She really started complaining about her ear hurting yesterday afternoon and by 4:30pm I knew without a doubt that she had another infection. She hardly slept last night even with the Motrin we gave her before bed. Anyway... because her pulse was elevated, the Dr. wanted to have a chest x-ray done just to make sure nothing was wrong. Poor Alli had to be strapped screaming to the x-ray table :( We got the results from the x-ray this afternoon and thankfully they were fine!
5 infusions down, and so far so good! Thank you for all of the thoughts and prayers! I know they are helping! Please pray for all of the MPS children, and MPS children who have earned their wings.
Love,
The Restemayer's
Monday, June 23, 2003 3:35 PM CDT **** I am thinking about doing a "Save a Tab...Save a Life" fundraiser for the MPS Society. Please if anyone has done this fundraiser, please contact me. I would appreciate any and all advice you have for me!
Also, I wanted to share a webpage that I recently learned about. Maxwell Forand is a three year old boy who was diagnosed with MPS 1 in March '03. Max had his first infusion of Aldurazyme last week! Please visit his site (www.caringbridge.org/nj/maxforand) and let Max's family know we are thinking of him! Congratulations Max on your first infusion! We wish you the BEST!
Allsion is having a great week! Yesterday she went to the Zoo with her dad and sister,Ashley. I was able to get some much needed quiet time! Allison's right ear has been draining a lot the last two days. We will see her Dr. on Wed. for her next infusion so I don't think I will take her in. She doesn't seem to be in any pain, I just hope it is not another ear infection! I don't remember this much drainage with her first set of PE Tubes.
Love,
The Restemayer's
Wednesday, June 18, 2003 8:59 PM CDT
Allison's fourth treatment went really well. There was no problen accessing the port this time, thank goodness! Allison was still very upset as soon as she went into the exam room. She always says "ALL DONE..ALL DONE" and cries OWIE! She tends to be pretty upset until she falls asleep. Today we started around 8:15am and she finally fell asleep at 10am. She slept for an hour and a half..I hope it is not a trend to have her sleep a little less during each infusion!!!!
As soon as Alli wakes up, she is in a great mood! She always comments on the red light on her toe:) (The monitor that keeps track of her pulse and her SAT's is put on her big toe like a bandaid, and the red light shines through) She is ready for some snacks very shortly after she wakes up! Her favorites are Fruit Snacks and Goldfish. Today she worked on drawing circles and rainbows! Her circles are pretty good but you really have to use your imagination to see the same rainbow that she does!
The Dr. seemed pleased with Allison's progress again this week! Her Liver and Spleen continue to decrease in size and her gums keep going down exposing more of those beautiful teeth! Alli is still free from ear and sinus infections! This alone is a major improvement! She was on an antibiotic for almost 6 months straight! (PE tubes are GREAT!) She is feeling good and has a TON of energy!
Allison has a PT that comes to work with her for an hour a week, and starting next week she will start an hour of speech per week too! Allison is able to get these services through the Early Childhood program in our state. She qualified for the program due to her diagnosis of MPS. When Alli turns three, her diagnosis will no longer qualify her for services. She would have to be developmentally delayed to still qualify. Allisons developmental testing all came back well within the normal range for her age. YEAH! I am so thankful that the MPS has not affected her development! I requested that we add the weekly Speech Therapy because I want her to get all of the help that she can. She is talking better and better all of the time ..but ..who would object to a speech therapist comming into your home and working one on one with your child to help them develop their language skills?
Congratulations to Jacob and Samantha Slawson! They had their first Aldurazyme infusion yesterday and it went very well! I pray that this enzyme does wonderful things for both of you!
Thank you to everyone following our progress! Your support means more to us than I can even express! I'm going to sign off and get back to getting ready for our Garage Sale on Saturday...
Love,
The Restemayers
Wednesday, June 11, 2003 8:54 PM CDT ~NEW PICTURES!~NEW PICTURES!~NEW PICTURES!~
Good News! It is not just my imagination, Allison's Liver and Spleen ARE getting smaller! Alli's Dr. was pleasantly surprised to see that the Aldurazyme is already working! He said that her Liver and Spleen seem smaller, her stomach is softer, the swelling in her gums that made her teeth appear to be only half way up is going down, and he said he saw her ear tube in one ear for the first time today. I guess that means that some of the build up in her ear canals must be going down! I can't tell you what a wonderful feeling it was to hear these things from the DR.!
YEAH!!!!!
Allison's infusion did not go quite as smooth today. When the nurse went to access her port with the needle, she couldn't get the needle in the hole in the center of the port. Her nurse is one that she has had before and she is very very good. She tried three times and still no luck. She was wondering if the port had turned around so it was backwards, and the opening was on the underside of the port. I kept asking , "What do we do if it did get turned around?!?" or "Can that happen?" I guess it can happen... but it does not happen very often. She thought she should have another nurse come in and try and if that didn't work we would call in the Dr. and probably go to get and x-ray to see what was going on. If the port was turned around, she would have to have surgery to fix it. :0 Now I was scared! The second nurse came in and accessed the port on her first try! Whew! By this time, Allison was hysterical. She started in with the "ALL DONE!..OWIE ALL DONE!" poor baby! It took her quite a while to calm down. I ended up laying in the bed with her holding her as tightly as I could while we watched "Barney". She fell asleep about 15 minutes into our first "Barney" video of the day.
Alli slept for a little less than two hours today. Pretty good but not as nice as the three hour naps she took the last two weeks! It was much more chalenging this time to try to keep her occupied. We tried to take her to the playroom, but the IV tubes are not very long and I had to be two steps or less behind a very active two year old to keep her from pulling th IV out! We decided it was much easier to try to keep her occupied in the bed than to try to chase her around in the playroom with the IV pole in tow!
So far Allison has been very lucky to have her infusions go as well as they have! I pray that this continues. Please say a prayer for the MPS babies going through transplant, the MPS children on the ERT, and all of the MPS kids still waiting for treatment. They need all the prayers and good thoughts they can get! Thank you!
Love,
The Restemayer's
Sunday, June 8, 2003 12:11 AM CDT Allison has had a great couple of weeks! She has been running nonstop! It is so fun to hear her talk sooo much. Last night she kept calling Jim and I by our first names and laughing :) She yell, "Hey Jim" at her dad and then just laugh and laugh. She has been trying to repeat almost everything we say...Allison's newest phrase is "Holy Buckets" I'm not sure how much I like that one, but I was the one who said it..so I guess I have to be OK with her saying it too!
I think Allison's tummy is getting a little smaller! I hope this means the ERT is working! Alli's belly used to look and feel like a pregnant belly. It was hard and distended, her pants would roll down her stomach, and jeans were totally out of the question for her. Now, her stomach is getting softer! It is not nearly as hard , and I think it is getting a little bit smaller! Yesterday she wore a pair of denim capri pants that were too tight last month!!!
I don't think I am imagining this progress...it is a small step but I think it is a little bit of proof that the ERT is already starting to work for her!!
Ashley is so excited about making the Central Dakota Children's Choir that she has been singing non-stop! She told me that I didn't have to worry about her trying our for the show "American Juniors" because she already IS and American Junior ! LOL
Jim has been busy this weekend building one of those wooden play centers for the backyard! He went and bought the lumber on friday night and started cutting around 9am yesterday! He worked all day! He had to leave it for the night at 6pm because it started to rain. I'm sure he will get it done today. Ashley and Allison are SOOOO excited. Everytime Allison looks out into the backyard where Jim is working she yells,"SLIDE! Whee, fun!"
Thank you for checking on us! I will post again after Allison's next infusion on Wednesday morning!
Love,
The Restemayers
Wednesday, June 4, 2003 10:24 PM CDT Alli has had her second infusion!
I have been talking to Alli for the last couple of days about going in for her medicine. If you ask her where the Dr. puts her medicine, she will point to her port. I think this helped a little bit. She was still scared when the nurses started getting ready to access her port and she still cried hard when they put the needle in and gave her the Benedryl through it, but she was not even close to as hysterical as she was last week. I know she will adjust quickly and every time she has an infusion it will be a little easier on her.
Allison slept for almost three hours again today! The Benedryl must be very potent! I keep thinking that this is too easy. Allison has slept through the majority of both of her infusions! When she woke up today she was in a great mood, she read books with me and we watched "Barney". She had a snack and some juice and then it was time to take the needle out of the port and go home! Thanks for checking on us!
Love,
The Restemayers
Tuesday, June 3, 2003 8:53 PM CDT Allison has had a great week. She seems to be feeling much better these last few days. I don't know if that is because she is just about done with her antibiotics and her sinus infections seems to have cleared up, or maybe the PE tubes she had put in when she had her surgery to place the port are helping, or just maybe the ERT.? She has been climbing everything at the park, and jumping off of anything that she climbs up, just trusting that someone will be right there to catch her! She has now mastered the ladder that goes up to the platform on the playcenter at the park! Yeah Alli!
I have been looking at her through a microscope all week :) asking her how she feels constantly. She is 2 and her standard answer is... good. I know she can't tell me how she feels for sure, but I am so excited that she has started the Aldurazyme that I think that it has to be working for her. :)
We go in for her next infusion tomorrow morning at 8am. I have this feeling that it will not be quite as easy to keep her occupied this time! Last week it was at noon and that is NAP time. Benedryl and nap time go very well together!
The benedryl may help her sleep for part of the time but I know it won't be for the 3hrs she slept last time. I will be bringing lots of books!
I will let you know how tomorrow goes!
Love,
The Restemayers
Wednesday, May 28, 2003 10:45 PM CDT ALLISON HAS HER ENZYME!!!!!!!! I am so excited! I can hardly believe it. Today was awesome. We arrived on the pediatric floor of the clinic at noon and were immediately escorted into a conference room filled with medical professionals. I felt so out of place :) Here I am with a BIG backpack filled with puzzles & books, a diaper bag filled with snacks, juice,& diapers, pushing a big stroller with my 2 yr old in it who just sang the "I love you" Barney song VERY loudly as we came down the hall! LOL Not to mention that I had spent the morning running around like a chicken with my head cut off trying to get everything ready, keep my daycare kids from beating on each other AND trying to get a urine specimen from an uncooperative two year old! I'm sure I looked VERY frazzled!
There was a presentation on MPS 1 and on the results of the clinical trials for Aldurazyme. It was amazing to have people with such knowledge about MPS telling us about the possible reactions and how soon we could see progress! Most of the pictures they showed were of older children whose disease had progressed a lot more than Alli, so it was a little hard for me to know that without treatment...Allison could be in the same position as she got older. I know the reality of MPS, but it still hits really hard to see how devestating this can be.
The hardest part for Alli was as the nurses got ready to access her port. She was scared as soon as the nurses brought us into an exam room. She cried while they gave her the pre-meds (Tylenol and Benedryl) and when they put the needle in the port. She ended up pretty much screaming herself to sleep, with the help of the Benedryl they gave her through the port. She was asleep by 1pm. There was a nurse in her room ALL DAY! ONE on ONE! WOW! Alli's vitals were taken every 15 minutes all day. The Aldurazyme started at 1:30pm. YEAH!!! I think the actual event was non-climatic for everyone else but me! I kept thinking..this enzyme that she is missing ..the one whose absence results in such damage..is running into her body!
Allison slept until 4pm! Benedryl is good! When she woke up she was very happy. She ate some snacks, put together her puzzles and watched a "Barney" video. We finished the infusion at 5:45pm and were home by 6!
Every Wednesday at 8am...we will be at Medcenter One. I'm sure Allison will just learn to accept this into our "normal" routine. Thank you all so much for your prayers and good thoughts! ERT is so new, I know we all still have a lot to learn about its effects over time. We have HOPE!
Love,
The Restemayer's
**New Pictures!**
Tuesday, May 27, 2003 2:37 PM CDT Wednesday at 12noon!!! Alli is scheduled for her first infusion tommorrow!!! I was told to plan for at least 6 hours at the hospital for the first time. The staff at Medcenter will be trained DURRING her first infusion, so after this we hope it will not take as long.
I am so excited and filled with hope I know I could not describe it. I am just so happy that she is finally going to have this enzyme running through her! Please wish her luck! Thanks.
Love,
Jenn, Jim , Ashley & ALLISON
Monday, May 26, 2003 7:03 PM CDT Hi!
I am still waiting to hear when Allison's first infusion will be. We know that it will be either May 28th or the 29th, from what I understand, we are waiting on the hospital (Medcenter One) to decide the day. Everyone I have talked to at the hospital has graciously found a way around answering the question "WHEN!" I know the people from Genzyme are anxiously waiting for an answer too! They have to coordinate the team that is comming to oversee the infusion.
Allison is doing great. Her port, the bruising, the stitches....None of it seems to bother her. :) I took her to the walk - in clinic on Sat. to have her ears checked. Her ears look fine but..She has a sinus infection( So do I). We are back on Augmentin. I hope this will be the last round of antibiotics for a while!
We are so lucky to have so many people checking on Allison, THANK YOU THANK YOU THANK YOU. I hope to hear in the morning as to when Alli's infusion will be. I will update again then!
Love,
Jim, Jenn, Ashley & Allison
*NEW PICTURES* It only took me an hour to get the new pictures on the page!?! LOL
Wednesday, May 21, 2003 9:42 AM CDT I got a call yesterday afternoon from Genzyme! They want to set up Allison's first infusion for either the 28th or 29th! I really wanted her to start the ERT this week but we have been waiting for what seems like forever so what is one more week. :) Genzyme is going to fly in a doctor, nurses, and a pharmasist who have all had experience with Aldurazyme. They will train the staff at Medcenter One on the ERT! They thought that while the "experts" are here Allison should have her first infusion. I think it sounds great for Alli to have the "experts" here to oversee her first infusion!!
I am so excited for her to start! Maybe once the enzyme is running through her body, I will be able to take a deep breath again. I hope. I know that this ERT is not a cure, but I HOPE that it will help her enough for her to be able to enjoy a long and healthy(or as healthy as possible) life. For now, we just thank God for every day that we have together and keep HOPING!!
Love,
Jim, Jenn, Ashley & Allison
Saturday, May 17, 2003 2:17 PM CDT We are HOME!! Alli was released from the hospital at 9:30 yesterday morning! We got in the car and made it back to Bismarck by 5pm. We were in a hurry to get home and see Ashley! Allison is such a trooper I can hardly believe it. She is running and playing as if nothing happened. You would never know she had surgery two days ago.
Thank you mom for comming to be with Ashley and for running my daycare while we were gone! You helped us out a lot and we appreciate it!
I got a press release from Genzyme! Aldurazyme is now available!!!!! They said that it was shipped this last week! We should be able to get it this week!!! I will let you know when her first infusion will be!
Thank you everyone for your thoughts and prayers! They mean the world to us.
Love,
Jenn, Jim, Ashley, & Allison
Thursday, May 15, 2003 3:05 PM CDT Alli did great! We arrived at the hospital between 5:30 and 6:00am this morning to check in before surgery. Allison and I were brought to the room where they put her under around 7:30, That was AWFUL! She looked so scared.. I was so scared..they held a mask over her mouth and nose to have her breathe in the gas to put her to sleep before they put in the IV. She was crying so hard she was purple
:( I held her hand until she was asleep. Then they sent me to the waiting room. Jim and I sat in the waiting room until 10:45am when we were finally able to see our baby! The Dr.'s say that the surgery went very well - no problems! Yeah Alli!!! She has new ear tubes! I hope this gets rid of all the ear infections! She also has a port just under the skin on the left side of her chest. She will have to have some stitches out in about 10 days. The port does not seem to bother her too much.. It is a little sore but not enough to really cause her pain. We will get the results of the EEG that she had done yesterday, and the MRI that was done today, hopefully later this afternoon.
Thank you everyone for all of the positive thoughts and prayers for Alli! They worked and everything went well!
CONGRATULATIONS to my Ashley!!! She auditioned for the Central Dakota Childrens Choir the first week of May, and she received her letter in the mail on Tuesday saying that she made it!! I sure wish I could have been there to see your face when you read the good news! I am so proud of you Ashley! I miss you, I love you and we will be home soon!
Love,
Jim, Jenn, Ashley, & Allison
Wednesday, May 14, 2003 7:59 PM CDT I don't know where to start! We took a shuttle to Fairview at 7:30am for our first appt of the day with Dr. Charlie Peters. We met with Dr. Peters for an hour and talked about the differences between the BMT or Cord Blood Transplant and the Aldurazyme. Next was our appt with Dr. Chet Whitley, he did a thorough physical exam and spent quite a bit of time talking about the Aldurazyme. Physically, Allison's Liver and Spleen are enlarged, she has mild corneal clouding, she has a very mild hearing loss ( but they hope that will correct itself as soon as we can control the ear infections), she has some buildup in her heart valves, but not enough to cause concern at this point. Allison has also lost some Range of Motion in her shoulders and her hands are not as flexable as they should be. The good news is...she is doing very well for a 27mo old with MPS 1 !! Hopefully the Aldurazyme will help with some of this stuff!
This afternoon, Allison had to have Developmental testing done...She had hardly eaten anything all day, she took a 20 min. nap sitting up in the stroller while we were talking to Dr. Whitley...I was a little nervous about how accurate it would be. Alli did great! She was very cooperative and did almost everything they asked of her. (She had her typical two year old moments..Every once in a while when the lady asked her to do something, she would just say "NO!" or "NO, tank youuuu" at least she was polite :)
We don't have the full write up yet but when the Dr. came to give us the results she said that Alli was well within normal range in all of the areas tested! This just confirms for us that we are making the right decision for Allison's treatment!
Around 4pm, we ment with a nuerologist, saw Dr. Whitley again, had a EEG done on her heart because they couldn't fing the results from the EEG she had in Bismarck, and finally at 5:30 we were done!
Allison's surgery has been moved up! It is tomorrow at 7:30am. We are exhausted and scared! Please Pray.
Friday, May 9, 2003 3:18 PM CDT I heard from Fairview this afternoon and it sounds like Allison will have her port placed, her ear tubes, and her MRI done on Friday May 16th, 2003! We will need to leave for the cities on Tuesday afternoon so we are ready for Allison's first appointment at 8am on Weds. morning! It sounds like Alli will have all of her consults on Weds. and her nuerological work up on Thursday. If all goes well(knock on wood!) Alli will be released from the hospital Saturday morning :)
Please keep Allison in your prayers! This will be Allison's first surgery!
I want to thank you all for checking on us! Your entries in the guestbook mean so much to us. I am in awe that Alli's page has had so many people visit already! Thank you.
Have a wonderful Mother's Day!
Love,
Jennifer, Jim, Ashley & Allison
Friday, May 2, 2003 9:31 PM CDT I wanted to write a little about Allisons diagnosis and explain how we found out and what MPS is. The MPS society's webpage is also a very good resource to learn about the different types of MPS and ML disorders. There is a link to the MPS Society at the bottom of this page!
Nov 15th, 2002 is when our lives were turned upside down with the first mention of anything being wrong with our beautiful baby girl. Allison climbed up onto the couch and flipped off. After the fall, she had no balance and could not even stand up by herself. The Pediatrician on call ordered some x-rays of her legs, arms and spine. The x-rays showed that Alli has one vertebra that was “parrot – beaked” meaning that is was an odd shape. Allison had a mild concussion as a result of her fall, but given a day or two she would be fine. The Dr. also noticed that, along with the misshapen vertebrae, Allison has a large head for her age and some of her facial features could be similar to kids with a genetic disorder. OK… we went to the clinic with an injured child…What was he talking about?! A Genetic Disorder!?! Not MY baby…She is perfect! The doctor sent us home with a photocopy of the PDR that described something called Hurler Syndrome. It was AWFUL! I had never heard of MPS or Hurler Syndrome until that day. Jim and I were so scared of this disorder called MPS, we couldn’t ever consider the possibility that Allison could be affected by it. We started the testing process… just to rule it out so we could go on with our lives. Guess What… On January 8th 2003, just weeks away from her 2nd birthday, Allison was diagnosed with MPS 1.
MPS I (historically known as Hurler, Hurler-Scheie, and Scheie Syndromes) is an inherited lysosomal storage disorder caused by the deficiency of an enzyme called alpha-L-iduronidase. This enzyme is required for the breakdown of certain substances in the body known as glycosaminoglycans (commonly referred to as GAGs). Without sufficient quantities of this enzyme, GAGs accumulate in virtually all organs of the body, causing progressive damage.
The incidence of MPS I is estimated at about 1 in 100,000 births.
Even though many patients with this disease may have the same enzyme deficiency, patients with this disease can have a wide range of symptoms and experience variable degrees of disease severity.
Bone Marrow or Cord Blood Transplant is an option for kids with MPS but Until April 30th 2003, there was no treatment specific to MPS 1. On April 30th, Aldurazyme, an Enzyme Replacement Therapy, was approved by the FDA! The Enzyme replacement therapy has had wonderful results with the children in the clinical trials! We pray that it works as well for Alli!
I will let everyone know when Allison is scheduled to have her surgery as soon as I hear!
Jenn
Thursday, May 1, 2003 10:05 AM CDT Aldurazyme has been approved by the FDA!!!! It is here!
Our next step will be to schedule surgery to place a port, put tubes in Alli's ears to get rid of all of the Ear infections, and get an MRI. We will be going to Fairview to have the surgery because of the risk of kids with MPS and anesthetics.
Allison should be able to start the Aldurazyme within the next 4 weeks! My baby will get the enzyme she is missing!
The Aldurazyme will be given in the form of an I.V. infusion, once a week, that will take between 3 and 5 hours to infuse. I will let everyone know when Alli's surgery is scheduled for!
Thank you for checking on our baby!
Jennifer, Jim, Ashley, and Allison
Friday, April 25, 2003 12:59 AM CDT This page has just been created. Please check back for additional updates.
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