It's Official, We are ALL going to North Carolina

I've been married to a man in the Army long enough to know that things can and do often change at the drop of a hat and nothing is official until you have actual orders in hand. When Mike was at the career course we were told for months that he was going to be deploying to Iraq immediately after finishing the career course only to find out 2 weeks prior to his graduation that he wasn't going to Iraq after all and instead we moved to Ft. Lewis.

We'll it's official, Mike got his orders today! We're all moving to North Carolina. We're thrilled that we will all be able to be together. We're hoping we will be able to move very quickly. We should find out by Monday how quickly we will be able to leave Washington but we expect to be in North Carolina by mid-June!

IEP-Individual Education Plan

Olivia is having her evaluations this week with our school district so that we can create her IEP for next year. Today she had physical therapy and occupational therappy, tomorrow will be speech and cognitive evaluations. Today was such an emotional day for me. There were so many points during the evaluation where I was so proud of her, she was talking more and she easily completed tasks that she'd never been asked to do before. At the same time she was very distracted and she didn't do simple things that she has done 100 times before. I don't know if she just didn't want to do it or if she wasn't able to concentrate long enough to do it. Is her attention span getting worse or was today just a bad day? I pray that I can continue to love an appreciate Olivia for who she is each day and not compare one day's progress to the next. Today I am thankful that it is my eldest child, my firstborn who is affected with this terrible disease. I don't know to expect anything different. For the most part Olivia met all of ther major developmental milestones well within the "normal" range. I'm sure that there are many differences between Olivia and the "average" child her age but in this situation I belive that ignorance is bliss. I am dreading the meeting next week when we will create her IEP. I feel like I have no clue what Olivia "should" be able to do at her age. At least the teachers and therapists we've met so far seem to be truly interested in learning who Olivia is as an individual!

Beautiful Days

The weather here has been beautiful! It's almost like summer. We have spent almost every second outside soaking up the sunshine. One of the things we will miss the most about Washington is the Puget Sound. It's beautiful, we love being so close to the water. This past week we had a picnic lunch at the park. I love seeing Mike show Olivia the water!

Men vs. Women, Boys vs. Girls

Today was a busy day, we were going from appointment to appointment, meeting to meeting with tons of errands to run in between. Thankfully Mike was able to stay home and spend some quality time with Peter so it was just me and Olivia. At one point I realized that I had forgotten something at home so I stopped by the house to pick it up. I'm running up the stairs to the front door and I see a snake. It was probably a harmless little garden snake, it wasn't very big but I completely freaked out. I screamed, I jumped, I'm sure I looked like a crazy person. The snake slithered off into the garden and I continued on my way into the house. Of course Mike hears my shrieking and comes to investigate. When I tell him about the snake he gets all excited. He goes running out into the yard on search for the snake.

I was struck by the difference between us. I'm still a little emotionally scared from my brief encounter with the snake and I won't go up the stairs again without thinking twice about our little visitor. I hate snakes and they always give me the shivers! My husband on the other hand was thrilled to hunt down the little visitor with the closest "weapon" at hand. In this case it was a rock, from the garden. Who knows how long he spent trying to rid us of this unpleasant visitor but I'm sure he enjoyed every minute of it.



When I got back in the car Olivia asked what happened and when I told her about the snake her immediate response was and alarmed "oh oh"! Apparently she is not a fan of snakes either. This got me thinking about Peter. I am not prepared for snakes, frogs, snails, bugs, etc. I pray that he is not the type to bring these little creatures home for me to see!

Here's a picture of Mike, hunting down the poor snake.

Little Mama

I feel so lucky that I had a little girl before I had a little boy! Olivia loves to help out. She loves to get her baby doll and copy whatever I'm doing. Just as Peter grows and changes daily so does her baby. Her baby doll has graduated from bassinet to crib, the infant tub to the regular tub, laying down to sitting up, bottles to solids, just like Peter has. Sometimes I get a little sad watching her take such good care of her baby because I know that she'll never get to experience the joy of being a mother herself. Thankfully that sadness is tempered by knowing that she does get to experience having a little baby brother. It is the little things like this that allow me to see God's plan in our lives. If we had found out about Olivia's diagnosis sooner then Peter might not be a part of our family right now and Olivia wouldn't get to have this experience of being a "little mama" herself. Hope you enjoy this little glimpse of our little mama.

What a deal!

Those of you who know me best know that I'm a sucker for a trashy tv show, book, or magazine. A good friend of mine just forwarded me this link to get a subscription to OK! Magazine for a year for $6.00! I just used it and I was able to get an additional subscription for just $7. So I got OK! for myself and I got Men's Journal for Mike. The best $13 I've spent all day :)

OK! mag for only $6
use code 8172
http://www.discountmags.com/product/5079/ok-?a=slickdeals

All about Peter

We've been really focused on Olivia lately but that certainly doesn't mean that we've forgotten about Peter. I fall more in love with him everyday. He's sitting up all by himself now and he is getting so very close to crawling. He has been teething hard core and I'm expecting to see his first little tooth appear any day now. Here is a picture from our walk today and a video clip of how Peter and I entertain ourselves during Olivia's nap time. His new favorite game is Peek-a-boo. He is trying to jump out of his exersaucer to get me when I hide and gets the biggest grin on his face when he sees me. I LOVE it and I would play Peek-a-boo with him all day if I could. Mike isn't exactly a fan of me calling Peter "pretty boy" so I'll have to work on that.

Ready, Set, GO

So Olivia was supposed to be resting after her eventful morning but instead she was playing her new favorite game. She likes to load up her shopping cart with the most random assortment of items: her baby doll, an old newspaper, various items of clothing. Once the cart is loaded up she yells, "ready, set, go" before running off down the hallway into a door. The door has to be closed, the big loud crash as she slams the cart into the door makes the game so much more exciting. I thought it was so cute I just have to share the video.

Calming down

After my super long post earlier about how much I hated Madigan I am feeling much better now. Mike got home from work and I had a nice long bath and a glass of wine. I love that my husband can force me to stop and relax. To save you from reading the entire post earlier I'll just summarize....

Today Olivia was supposed to have a sedated MRI and hearing test. Even though we've spent weeks coordinating this it turned out to not be coordinated at all. Anesthesia didn't know they were doing an MRI. The MRI people didn't know they were doing a hearing test. The Audiology doctors didn't know they were doing an MRI. It took forever but everything worked out okay in the end. We don't have the results of the MRI, we'll get those on Thursday. Her hearing test was not very helpful. Apparently she's hearing perfectly out of her right ear but experiencing severe hearing loss in her left ear. They don't know if this is because her ear tube on that side is clogged and there's a fluid build up or if it's because the bones in her ear are not functioning properly. They recommend a CT scan to be sure. Until the issue can be resolved they told us to try and talk on her right side and to make eye contact when we're speaking with her.

If you can't hack it then get out of the way

We are finally home from Olivia's MRI/Hearing test and I'm so frustrated I just have to vent a little bit.

For the most part I feel that the care we've received at Madigan (the hospital here at Ft. Lews) has been good. There are even times I would go so far as to say it has been outstanding. Today was not one of those days. I am so frustrated! If you're not capable of coordinating various services to provide for my child then admit it and move out of the way so that we can make sure she is seen by someone who's capable of caring for her!

We've had Olivia's MRI/Hearing test scheduled for several weeks now. I'd spoken with the chief of audiology. I'd given her hard copies of Olivia's last three hearing tests. I'd given her literature about Sanfilippo Syndrome and hearing loss. She was prepared and was on board with our plan to administer the hearing test while Olivia was sedated for her MRI.

Last Friday we spent 3 and a half hours at Madigan doing our series of pre-op appointments. We met with an anesthesiologist. We explained to her that Olivia would be having an MRI as well as a hearing test. I gave her copies of the "difficult airway" paperwork that we were provided after Olivia's last surgery. I gave them literature about Sanfilippo Syndrome. I even handed out purple awareness ribbons because it happened to be International MPS awareness day. She assured me that they would meet and come up with a plan that would address our special needs. We met with a nurse coordinator who was responsible for coordinating all aspects of the MRI and the hearing test. We were there for 3 and a half hours!

Today when we arrived as instructed at 7:45 am for Olivia's 8:00 am MRI. The woman at the check out desk was rude but it's early in the morning lets give her the benefit of the doubt. She told us to sit in the waiting room and someone would come find us. Olivia hadn't had a thing to eat or drink since 7:00pm the night before so she's thirsty and hungry. We wait, and wait. Finally around 9 am we see an anesthesiologist. He says they're running behind but they'll be ready soon. "Great, do you have the information about her "difficult airway", I think it's in her chart" (I'm being super polite here, I know it's in her chart, I saw them put it there). He responds by saying that he hadn't looked at her chart. Hmmmmm. NOT OK, you are not about to take my child and put her to sleep without looking at her chart. I give him the info, he looks it over and is concerned. He's not sure they can sedate her here in the MRI area, they might need to go do it in an operating room. He needs to confer with the other anesthesiologists. Go ahead, please take another copy of this paperwork. They return about 45 minutes later with their plan. We're being sent up to the OR. They will put Olivia asleep up there, then bring her down stairs to do the MRI and then bring her back upstairs to do the hearing test. Why didn't they have this plan in place before!!!! We go upstairs and at 11 am they are finally ready to put Olivia asleep to do the MRI and then the hearing test. They told us the entire procedure should take a couple of hours, it ended up taking 7!

Olivia did great, it's all over. I don't know the results of the MRI. We never spoke to anyone in radiology. They didn't give us any results, we never met them. By the time it was all over I just wanted to get home.

But seriously, get it together people. My child has some special needs, I provided as much information as I could. If you can't get it together then I do not have time to deal with your incompetent system. UGGGH!

Where do we go from here?

We've known for a several days now that our request for a transplant for Olivia was approved. It's finally starting to sink in that this is actually happening. So many of you have asked where we go from here so I thought that I'd share a little more about that.

1. Mike has officially requested a compassionate reassignment to Ft. Bragg, North Carolina. If this is granted then we will be moving in the next 3-6 weeks to North Carolina. If this is not granted then he will be leaving for Afghanistan in the next 4-6 weeks. We are hoping to find out if his request is granted next week.

2. The transplant that we keep referring to is an umbilical cord stem cell blood transplant. First they have to find a matching donor. They use umbilical cord blood that has been donated and is banked in a blood bank. Olivia will have to go through about 2 weeks of prep appointments at Duke. Then Olivia will be admitted to the hospital and she will undergo 7-9 days of intense chemotherapy. The chemotherapy will completely wipe out her immune system so that when the transplant is performed her body does not reject the new cells. After the chemotherapy is finished then they do the transplant. Olivia will need to stay in the hospital for approximately 3-4 months until her body begins to accept the transplant and begins producing new, healthy cells and her immune system begins to function again. We will then be allowed to leave the hospital but we'll need to stay very close to the hospital because Olivia will be returning almost daily for appointments. These will gradually decrease to a couple of times a week and then just once a week. Start to finish the process generally takes about 6 months without complications. After about 6 months we hope to be able to move closer to Ft. Bragg (which is about an hour and a half away from Duke). We will all have to be very careful for the first year to 18 months following the transplant. Olivia cannot be around sick kids, we have to be cautious about going into public places. She will most likely need to wear a mask when we're out and about. Olivia will have to get all her immunizations and vaccinations again. She will be on medications to prevent her body from rejecting the transplant for at least a year following the procedure.

Obviously this is not an easy procedure and the next couple of years will be pretty challenging. The transplant is also not a comprehensive cure. We are hoping that the transplant will repair the physical damage that has been done to Olivia's body and that it prevents future cognitive damage. Olivia will be the 5th child with Sanfilippo B to be transplanted.

3. The Pediatric Bone Marrow Transplant Unit is no place for an active little 6 month old so my parents have graciously offered to have Peter live with them while Olivia is an inpatient at Duke. Obviously this is ripping my heart apart but I just keep reminding myself that Mike (and thousands of other parents) have had to leave their children behind for much longer while they are deployed.

4. How can you help? We always appreciate your thoughts and prayers! We are working on some other ways that you can help so we'll be in touch with that soon.

We do have one more unique way that some of you might be able to help. If you are pregnant please consider banking your child's umbilical cord blood. There is generally not a charge for donating your child's cord blood to a public blood bank and you can get more information about donating cord blood by clicking here: Donate Cord Blood . As a result of Olivia's diagnosis we banked Peter's cord blood with a private blood bank, we chose to bank with CBR-Cord Blood Registry so I'm happy to share more about that experience with you if you're interested.

MPS Awareness Day-May 15, 2009

Today is International MPS Awareness Day. It is not a celebration, but a day to honor the children who have so courageously lived with this disease. I hope today will bring some much needed attention to the MPS diseases.

Today Olivia had her pre-op appointments for her MRI next week so we all wore purple ribbons to her appointment. We handed out purple ribbons to the nurses, anesthesiologists, and doctors we saw today. Today I proudly handed out ribbons and literature to anyone willing to listen. Thank you so much to my new friend Shanon for helping inspire me on MPS Awareness Day. I love reading her blog and learning about her beautiful children, Waverly and Oliver who both have MSP III. You can view their blog here: Exploring Holland


I only wish I could have been a little more organized, I would have mailed you all purple ribbons to wear today (and to share with all your friends and family). There's always next year......

My little man

We've spent a lot of time focusing on Olivia lately but Peter is getting to be so much fun! I can't believe that he's already 6 months old! He started baby food this last week and he LOVES it. No matter what it is he can't seem to get enough. He's so different from Olivia. She could take baby food or leave it, she only really loved the applesauce. Peter loves all of it! His favorites so far include squash and peas. The other day I was cleaning out Peter's closet and he discovered that he loves to look at himself in the full length mirror on his closet door. Too funny! He can sit up by himself but he's not interested in sitting still. He is almost crawling!

APPROVED

Praise God our prayers have been answered! We found out this afternoon that TriCare APPROVED our request for a transplant for Olivia. I'll share more tomorrow about the transplant process and where we go for here but tonight we're just celebrating that it was approved and we can stop our battle with the insurance company. Thank you for all your prayers and good thoughts!

I should get out more

So I had a fantastic time on my day alone! I ran a few errands. I went to McDonalds and tried their new iced mocha. I am not sure why but we get coupons for McDonalds in the mail all the time but they're in spanish. I'm sure it's some sort of marketing ploy based on our last name. The iced mocha was ok but I think I still prefer starbucks. I went to the park and read my book in peace for hours. I got to watch the ferry coming and going. It was wonderful. I came home refreshed and relaxed. Here's a pictrure of the beautiful view from my reading spot. I came home excited to tell Mike about my day. He asked what I did and I happily shared my day with him and his response was hmmm. I would have gone to a movie. Why didn't I think of that, I would have loved to see a movie! Oh well, I guess I should get out more!

Random

I absolutely love the neighborhood where we live. It's very family friendy. It's so close Mike can run to work. There are miles of trails. There are plenty of parks. We live in a great school district. I could go on and on. However today we were out on a walk, we're in the middle of the woods, we'd been walking along in the woods for about a mile when we saw this.....




seriously. It was so unexpected. We were in the middle of the woods, not a house or another human being in sight. Random.

Going off the grid

Today I'm going off the grid. I'm leaving the kiddos with Mike and I'm off to do whatever I want. Peter is 6 months old and he's started rice cereal and stage 1 baby foods so he's no longer permanently attached to my boob. Olivia is running around the house giggling uncontrollably because she is getting to spend the day with daddy. It's a beautiful day and I can't wait! I have my purse (not my diaper bag) packed, a great new library book, and I'm wearing a regular bra instead of a nursing bra! I'm ready for anything. Lets see how long I last. Without an agenda and a to do list I'm worried that I'll be back home in a couple of hours but for now at least I'm off the grid!

I did eventually open the door

Just to satisfy your curiosity......

Olivia only spent about 15 minutes in the pantry. I was afraid to open the door, I was sure she made a huge mess but she didn't! She did move a few things around but she found the book bag full of library books to be returned. When I opened the door she was happily reading "Green Eggs and Ham" to herself and she told me to close the door! Maybe I should lock her in the pantry more often.



Of course this is a terrible picture but you get the point.

Don't want to open the door

Olivia locked herself in the pantry about 10 minutes ago. I can hear her bumping around in there but she's not asking me to open the door and she seems content. I don't want to open the door. I'm enjoying these precious minutes to myself and I don't want to clean up whatever she's destroied in there. I wonder how long this pantry business will last.....

Laying it all on the line....

We overnighted our appeal to TRICARE yesterday. We've enlisted the help of our elected representatives (a Senator and a Congressman from Washington and a Senator from Colorado) to assist us in encouraging TRICARE to make a decision on the transplant quickly. We've learned that once TRICARE makes a decision it is final, there will be no more appeals. This is it.....we're laying it all on the line.

Our case manager in our congressman's office thinks that we should be able to have a decision within 2 weeks.

Some of you know that we have been in touch with another family in the area with 2 kids with Sanfilippo Syndrome. You may have noticed their blog recently appeared on the "other blogs I read list". Their mom courageously decided to take it to the media and their story was on our local news last night. Here's the link to the story and the video below.

Insurance denies boy second chance at life

The Bad News

We found out last week that TriWest denied our second appeal for a Blood Transplant for Olivia. I was so devistated last week that I just couldn't bring myself to share the bad news. We are in the process of appealing a final time. We will know something for sure in 60 days but we have also involved our Congressmen and Senators to encourage TRICARE to make a decision quickly. So we are hoping to know something sooner. This is such a difficult time for all of us. As parents, Mike and I are really struggling. We love Olivia so much and it's hard for us to see God's plan in all of this.

I also haven't mentioned it much but Mike is scheduled to leave for his third deployment very soon. This time he'll be going to Afganhistan and fortunately it's just a 12 month deployment (Mike's old unit from Colorado just returned from a 15 month deployment so we're very glad it's just a year long tour). We've been so focused on Olivia and the transplant that we haven't really prepared at all for the deployment. We had been hoping that the transplant would be approved and Mike could be transfered to Ft. Bragg, North Carolina. At this point we're just running out of time.

Please keep us in your thoughts and prayers. Despite everything that has been going on we are still happy and so greatful to be together right now. I can tell that so many people have been praying for us because I know we would be a mess right now otherwise!

My Famous Husband :)

The latest issue of the Loyola University New Orleans Magazine has an article about alumni who have served and are serving in the military. There are a couple of paragraphs about Mike.



You can read the article by clicking here

What took so long?

While we were at Mass today Olivia went to the nursery. She had a great time playing with the other kids and Mike and I were able to really enjoy Mass together with Peter. I've been thinking about this for a while. Why did I wait so long? This same thing happened when I went into labor with Olivia. I didn't think I needed any painkillers, I thought that I could have a natural childbirth. I had prepared for a natural childbirth. Even though I had to be induced and was getting the maximum amount of labor inducing drugs I still thought that I didn't need any pain medication. Even though the doctor had to manually break my water I thought that I didn't need pain medication. I waited until I had been in labor for 9 hours before I finally decided that I was ready for pain medication. Immediately after I got the epidural my first thought was, why did I wait so long for this! I realize that I'm a stubborn person but I also think it makes me appreciate the outcome even more. That epidural was fantastic and Mass today was peaceful and fulfilling.

Six Month Check Up

Peter had his six month check up this morning. He won't actually be six months old until the 11th but I still can't believe that he's almost half a year old! He weighs 16 lbs, 15 ounces and he's 24 inches long which is right at the 50th percentile. Peter is a very happy, healthy little boy! Here's a little video clip of Peter practicing his newest skill, blowing rasberries.