Lyla is finally out of surgery and doing well (currently playing with all her cords so that's a good sign!) And, everything went as planned. 

She's now going to recover the next couple days and starts chemo on Sunday. [...]

Lyla is going into surgery in a few hours.  In the grand scheme of things, this is pretty minor but always scary having a little one go under Anesthesia and for so long.  She will be under for at least 3 hours.  She's having her port taken out and getting a Hickman line placed (a double IV line on her chest so chemo and other drugs can be given at the same time).  She's also getting a Brain MRI (they have to sedate babies for that because it takes so long and they need to hold still).  She's going to have a Lumbar Puncture to test her spinal fluid. And, finally her eyes and nerves around them are going to be tested further (trying to do tests on a squirmy baby did not work very well yesterday!).  Her hemoglobin levels are a little low again so she's receiving a small blood transfusion here shortly. The worst part about the operation is the 6 hours beforehand that Lyla can't eat or drink.  I finally managed to sing her to sleep (in my horrible singing voice) so she's getting in a good nap beforehand!  We will let you know when she's out![...]

Lyla is in the hospital now for the next 2 months. Luckily she's pretty happy about her new bed and all the attention! At the moment her room just looks like a hospital room but with your help we would like to make it look like Lyla's room. If any of you have children that would like to draw/paint Lyla a picture or any other ideas you may have we would love to decorate her room to make it more homely. The address to send it to is:[...]

We arrived in Minneapolis last week and are getting settled in for a long 4 months....

The first week is appointments and work up for Lyla's transplant which is schedule for July 25th.  So far everything is going well and the doctors are very happy with how Lyla is doing.  Her heart has actually gotten better since they saw her in early May and is a good sign that her 9 doses of Enzyme infusions are working and the two blood transfusions thus far are helping with her hemoglobin levels.  Lyla's schedule as of now is:[...]

We've been asked a lot how people can help Lyla or other MPS patients or children needing a bone marrow transplant:
- sign up to be a potential bone marrow donor through Be The Match. Its super easy and only requires a saliva swab. https://bethematch.org/…/donate-b…/join-the-marrow-registry/
- donate or let pregnant friends know they can donate umbilical cord blood after their baby is born. Lyla found a match from the millions of donated cord blood around the world. Cord blood has been found to be more successful in hurler patient transplants and is readily available which is so important since we are racing against the clock for her to receive a transplant before the disease affects her brain.
https://bethematch.org/support-the-cause/donate-cord-blood/
-give blood through the American Red Cross or other organization. Lyla also inherited thalassemia minor which causes low white blood cell count and requires her to have frequent blood transfusions.  So many other people need transfusions as well
http://m.redcrossblood.org/learn…/blood-facts-and-statistics
- help find a cure by donating through the MPS society. http://mpssociety.org/donate/
- ask your pediatrician if they have ever heard of MPS and ask her obgyn if your state is going to start testing for MPS through newborn screenings. So many babies go undiagnosed until early childhood when the disease has already had significant physical and mental impacts that can't be reversed. Treatment can only stop it from getting worse.
- create awareness by sharing this post or any other MPS, BetheMatch, Red Cross, or related information in whatever country you live in.[...]

On April 4th 2016, at  7 months old, Lyla was diagnosed with a rare progressive genetic disease called Mucopolysaccharidosis or MPS. Further tests also confirmed she has the most severe form of MPS 1 called Hurler syndrome. If untreated, the disease causes severe physical and mental disabilities and children rarely live past the age of 10. Lyla has inherited this horrible disease because of a recessive gene in both Steve and I that's likely been passed down in both our families for generations. One copy of the gene (which we both have) has no impact but the 25% chance of two copies of the gene being passed on happened to our first born, little girl. The gene mutation means Lyla is missing an enzyme that breaks down sugar molecules in her cells and as a result they slowly build up and progressively damage every part of her body. Babies show little sign of the disease but as more and more cells become damaged, symptoms start to show. The first symptom in Lyla was a heart murmur noticed by her pediatrician at her 4 month checkup. Further analysis by a cardiologist confirmed Lyla has mitral valve prolapse, but there was no immediate need to worry because she would likely grow out of it. The second symptom noticed by Lyla’s mom was a sharp curve to her lower spine. When mentioned at her 6 month appointment, her pediatrician agreed and referred us to an orthopedic surgeon who said it would likely fix itself and if not we should return in 18 months. Luckily, Lyla has an amazing pediatrician who connected the dots that these two symptoms could be related and promptly called a genetic Doctor to get her opinion. The genetic testing was meant to "rule out" MPS.....
Here we are now, a few months later and after thinking our daughter's world had ended, but instead we are filled with hope and optimism. On July 25th 2016, Lyla will be receiving a bone marrow transplant from donated cord blood with a perfect 6 out of 6 match. Although it's not a cure, a successful transplant will stop most of the devastating effects of MPS and allow Lyla to live a pretty normal life attending school, playing sports, and hopefully going to college one day. Being given this chance is all due to her pediatrician, unrelated donors, and the amazing medical profession![...]

We received amazing news yesterday . Minissota have found an umbilical cord donor for Lyla's transplant. It is a perfect 6 out of 6 match which is a huge huge relief . All going well, Lyla is set for her transplant in mid July . [...]

After a long week in the wonderful university of Minnesota children's hospital Lyla, Helen and I are heading back to phoenix. All the doctors and nurses were amazing and Lyla was fascinated by all of them. Lyla successfully had a blood transfusion on Thursday and on Friday she went under and had ear tubes fitted along with an iv port and feeding tubes. She had her first dose of enzyme treatment today and was feeling her normal self by this afternoon. The next step is to sit tight  back home and wait to find a doner, which could be as quick as 2 weeks. Lyla will be having weekly enzyme therapy at Phoenix children's hospital    For hopefully 8 weeks before heading back to Minnesota . Lyla gives you all lots of kisses for caring about her x x x x x x x x[...]

GREAT NEWS

lyla has just come out of surgery and doing great. She had 4 procedures done so she is going to be a tired girl today. 1 of the surgeons has teenage girls so instead of doing the incision high on her chest where it is normally done he did it on her side at the bra line so it won't be visible when she wears her prom dress. What a sweet guy. [...]

Lyla was admitted into the hospital this afternoon to get ready for her pre-transplant operations tomorrow.  She just received a blood transfusion to get her hemoglobin levels up and she's now starting on Milrinone which will also help her heart not have to work so hard.  Going into any operation with heart problems is concerning but we feel confident that the medicine and extra blood will help a lot. [...]