Aaron's Hyper IgM Journey

Friday, December 31, 2010

Don't mess with me


Aaron is not allowed to watch TV accept in Mommy's car and DO NOT try to interupt.

Saturday, December 25, 2010

Friday, December 17, 2010

Granny Carol's Birthday


We had a fun time surprising Granny Carol with warm winter clothes. She is not use to the freezing cold temperatures we have had lately in Florida. We got her a hoodie, a scarf, and mittens. We had hopes to go to an outdoor place for lunch, but the 50's don't make for a good time outdoors (at least for us Floridians). We decided to stay in. Granny Carol surprised us by making lunch for everyone instead. She makes the best Pelau.

Apologies

We have been receiving the most beautiful Christmas cards this year. We love to see how the kids grow and what our family and friends have been doing for the past year. We are very sorry that we did not get our own cards done this year. Please check back later for some Christmas photos.

Saturday, December 4, 2010

Aaron health update


Aaron could not be doing better. He has gained 4 pounds in the past month and grown about 2 inches. He has not completely caught up to where he was before he stopped growing, but he is very close. He is back to 75-90% in height (was 95%) and 10-25% in weight (was 50%). By any standards he is well within a normal range and we couldn't be happier. He is walking all over the house and rarely crawls any more. He is so smart. He is starting to understand most things we tell him. He chooses not to understand "no" :)

The bone marrow team did a preliminary search and found no live donors that match Aaron. They found a couple of cord blood units that may work. They are doing more processing and will update us in the next week or so.

Wednesday, December 1, 2010

Monday, November 29, 2010

Hope is powerful

Saturday night I laid my head on my desk and cried. I felt defeated. I received another bill in the mail; this one for $898.85. Also in the mail was information sent by the NMDP with information regarding bone marrow transplants. Aaron had been registered by the transplant team in Tampa so they could do a search for his marrow. With so many bills to pay and serious life changing decisions I have to make on behalf of my son, I am very overwhelmed. What if they don’t find a match? What if they do? Should I go ahead and give him a transplant with an unrelated donor knowing that the risks could alter the quality of his life for the rest of his life. Graft vs host disease is real and it is common. Should we wait and try to have another child of our own that would be an identical match and a much better donor for Aaron? Where will we find $25,000 to do that? How can a mother face her child years to come and say, “I am sorry we could not find a donor for you and could not have another child to save your life?”

With tears in my eyes and a heavy heart, I lifted my head and prayed. There was no way I could figure this out on my own. I cried a little more and began to clear my head and answers started pouring out. I realized I could stop paying into my 401k for next year and that would help pay for a live in babysitter for Aaron. I realized I could ask the church for help. I belong to a large church with many resources. I asked if they could help me set up an account for Aaron that people could donate tax deductible donations. They were unable to help, but gave me some more suggestions. I spoke with my sister and she said that her family makes donations each year and that this year, they could donate their tax deductible donations toward Aaron’s bone marrow transplant.

I decided from the first day that I found out about Aaron’s condition, that I would not ask, “Why me?” or “Why is this happening to Aaron?” This experience is definitely the most tragic in my life, but it is also the most uplifting and inspirational time as well. The support we have received from family, friends, and strangers has been incredible. Without going through such a difficult situation, you cannot possible know how good life is and the power of prayer and the power of people. Whether Aaron is meant to be with us for a short period or a lifetime, he is the greatest gift I have ever been given.

Sunday, November 14, 2010

Walking

Aaron decided to let go and walk last week. He is so funny. He will be ready to do something for a long time, but won't. Then one day when you aren't paying much attention... there he goes. That was what happened last week. He has been walking along furniture since he was 9 or 10 months old. He would even take one step and then sit down. On Wednesday he decided to walk half way across the room for no apparent reason and he has been doing it ever since. Today he stood on his tip toes, opened his bedroom door and walked right outside to the hall. Wow!

Turning your head sideways may help view the video better. :)

Thursday, November 11, 2010

Dr. Sleasman

Dr. Sleasman is the pediatric Immunologist in Tampa. He has been directing Aaron's care since he was admitted to Arnold Palmer in September. He says Aaron looks great. Aaron has gained almost three pounds in three and a half weeks. He started walking without holding on yesterday. He walks all over the house. He babbles and babbles. Looking at him, you would never know he was sick!

Dr. Sleasman wants to do a bone marrow transplant as soon as possible. They began the HLA typing necessary for the bone marrow matching. The results should be back in 2 weeks. We should know by then if there is a match for Aaron. Please pray for Aaron that he can find a match. The doctor says the sooner Aaron has a transplant the less likely his body will develop a rejection to the transplant.

We met the transplant team. They are incredible people. Everyone was super nice and made us feel confident for Aaron's future.

Thursday, November 4, 2010

Aaron's 2nd Halloween


Last year Aaron went out Halloween night even though he was only 2 weeks old. I remember how proud I was to show off my little pumpkin. What a cutie! This year we didn't go trick or treating because Aaron is not supposed to be around people yet. Instead we took him for walks during the day to look at all the Halloween decorations. He loved them. He would kick up his legs and laugh and he even sang once for his Grandma Cindy.


Saturday, October 23, 2010

Aaron's 1st Birthday

What fun Aaron had on his Birthday. We actually celebrated Thurs Oct 14th (a day early) because I had to work on his birthday. The day started with a huge birthday cake and sneaking in a balloon that was not allowed. The hospital has a latex free policy, but they let Aaron play with it for the morning. Grandma Cindy had the room very festive with birthday decorations and party hats.


Aunt Katie and Granny Carol came and brought lots of gifts. Aaron's favorite was the wrapping paper and bows to play with.


The musician came in and sang along with the chaplain and the child life director.


Then Aaron had to go into surgery to stop his ulcers from bleeding. After 3 hours of surgery and post-op, he got his first birthday cake. It was the first thing he had eaten in days and he loved it!


After Aaron got home we celebrated again with Daddy and he tried out his Rock, Roll, and Ride trike which he also loves. He is so proud of himself.

Thursday, October 14, 2010

3 1/2 weeks at Arnold Palmer Hospital

Everything begin at 1:30pm Friday September 24th. Aaron had an appointment with the pulmonary doctors. He was getting his initial vitals checked when his oxygen saturation registered in the high 30s. The nurse called EMS and sent Aaron and I by ambulance to the emergency room. Michael followed in his truck.

After a long night in the emergency room, the physicians determined Aaron had a very severe lung infection that covered almost his entire lungs and his immune system was not normal. Aaron was then admitted to the hospital and put on oxygen and antibiotics.


By Saturday night Aaron's condition was determined to be so severe that he was intubated with a ventilator and moved to the ICU. At this point he had the ICU, infectious disease, and pulmonary doctors following him closely at the hospital as well as the pediatric immunologist in Tampa. The cultures also came back positive for PCP pneumonia (extremely rare in infants). He began IV Bactrim (which is on a nationwide shortage and only reserved for patients with PCP pneumonia).

Michael had to leave for 5 weeks of flight training with ExpressJet on Sunday. Thankfully, Grandma Cindy agreed to leave the Turquoise Angel studio in Tubac, Az to come help her grandson for as long as he needed her.

Over the next week Aaron had a dozen tests performed on him. Finally, a blood sample shipped overnight to Cincinnati confirmed a diagnosis of x-linked hyper IgM immunodeficiency. This condition is seen in 2 out of a million people.

After 2 weeks of intensive care, antibiotics and ventilation, Aaron's lungs were doing amazing. He surprised all his doctors with his recovery. However, Aaron had been having bloody stools and required 2 blood transfusions in the past couple of days. The GI doctor scoped him and found 8 ulcers but felt that they were no longer active and did not require intervention at the time.


Then... the scariest day of my life - Monday December 11th. Holly, the music therapist came by and was singing with her red guitar while Aaron was shaking his maracas. All of a sudden he coughed and coughed and blood spewed out of his mouth twice. The next day Dr. Mehta took Aaron to the OR and sealed up his largest ulcer. He was also given another blood transfusion. Thankfully, he has not had anymore blood loss.


Today, he had a port placement for the monthly IV infusions he will need to help maintain his immune system. We are very hopeful about his future. He will need a bone marrow transplant. An identical match would result in a cure. A bone marrow transplant should occur within 9 months to a year as long as we can find a good match.

Through this experience we have learned the enormity of God's love. We have never experienced more amazing people, caring nurses, compassionate doctors, and loving friends and family. We have people praying for us in Orlando, Trinidad, Washington, Texas, Arizona, Mexico, and many others. If there is one thing we have gained from this difficult time is how good people really are.

Friday, September 10, 2010

Bieber Fever hit the Wolsey house

Aaron got pretty excited when Justin Bieber started singing on TV.

Sunday, September 5, 2010

Swimming with my parents


So after my swimming lessons earlier this summer I am ready to get to the pool. After a few laps I realized my mom and mostly my dad could use a few pointers. So here I am giving the old man some lessons while my mom took pictures so she could review later. I would say the lessons were worth it.



Aaron loves playing with all his toys. He likes to stand by the toy bin and pulling all the toys out of the bin. He took his first steps 2 weeks ago today. He still prefers to crawl. He babbles and babbles. He says "baby" now.

Monday, August 23, 2010

Catching up

Serena took swimming lessons for 2 and 1/2 weeks. She loved it. She is jumping in and swimming with big arms.

My sister and her two girls came up and to visit and we went to Gatorland. The girls had so much fun running around in the splash pad. They also loved following Serena around everywhere she went.
Showing off their pacifiers.
All the Rose Family cousins in one picture and only one is crying... Not Bad!!!
Fun with the cousins at Chuck E Cheese.

Wednesday, July 28, 2010

Our scare from Aaron


Aaron started vomiting for an unknown reason Sunday night and stopped breathing for a few seconds. We ended up in the ER and then in the hospital. We are on day 3 right now and looking to stay one more night. Aaron is doing quite well despite the fact that he can't move more than 3 feet because he is hooked up to oxygen and an O2sat meter. Now that the scare is over, we are making the most of our time here. Aaron tries to break free daily. He managed to pull out his IV line and then the nurses decided he could keep it out. He is not so lucky with the oxygen hose stuck in his nose. The nurses have tried to stop his oxygen several times, but his lungs are still not back to normal yet.




Serena has been the true hero. She keeps us entertained. She LOVES the castle downstairs and she is determined to climb up that bean stock everyday. She doesn't believe me when I say it is impossible. We have one more day here and I wouldn't be surprised if I find her at the top tomorrow.


My sister and her girls stopped by. They were visiting from Spokane. It is nice to have visitors here at the hospital. Her girls are adorable. They hadn't been here for a half an hour and they were given free build-a-bears. Wow! What lucky girls.


Aaron is finally catching up on some much needed rest. The oxygen/sat machine beeps all night and we get very little sleep. He is also exhausted from screaming in protest whenever anyone puts on the gloves (he knows something is about to happen to him). The loudest I have heard him so far is when the respiratory therapists tried to clear out the mucus in his nose so he can breath. I call them the "torture team" since you would have thought strapped him down and stuck needles in him with the howls he was making.

It is easy to make light of all this now that he is in good spirits and doing well, but he really gave us quite the scare. We are so happy that our little guy is healthy and happy.

Thursday, July 22, 2010

Playing at the library




The library had really fun games and we played with trains for an hour. Serena had the longest train and tried to take it around the track, but Aaron's hands kept getting in the way. Aaron thought it was more fun to eat the trains than have them ride the tracks. Aaron also enjoyed pulling lots of books off the shelves and then crawling away to the next aisle. Mommy chased after him putting the books back and keeping track of her little boy. Serena found lots of great books to read. She really liked the pop up books.

Aaron Swimming Lessons


After 4 weeks of floating and turning over and drinking too much water, Aaron has it all figured out. He still whimpers during lessons with Ms. Kelly, but he laughs and plays with Mommy. He loves the pool! We took him to the pool at the Wilderness Lodge. He splashed his arms and jumped in from the side of the pool all by himself. While swimming along with Mommy, he would put his face in the pool by himself and then laugh. javascript:void(0)

Tuesday, July 20, 2010

Rock Star Living the Dream

Aaron in the background with Serena dancing. This is what we do all day long! Check out the video.

The Whole Family

Aaron has had plenty of attention on this blog and now it is time to turn it over to the rest of the family as well. Serena has been here all summer and is always full of excitement that we would like to share. We hope you all continue to enjoy our blog.

Friday, July 2, 2010

Riding in style

Grandma Cindy just bought Aaron a new car seat and it is super nice! He loves it. He outgrew his infant car seat a while ago and needed a new one. Aaron was also wearing his soccer outfit to help cheer for Daddy's favorite team - Brazil. Too bad they lost. Also check out the teeth.

A hot day at the park




Tuesday, June 15, 2010

Butterflies

Aaron watch out. I have a feeling Serena has many more ideas of dress up for you in the years to come.

Tuesday, June 8, 2010

Daddy, please stop cutting my hair!!!


Most new parents can't wait for their babies to grow hair. They love the little curls even if they are unruly. Not my husband. He gets excited if they baby's hair grows so he gets another chance to cut it all off. Thank goodness we didn't have a girl.

Friday, June 4, 2010

Ready, Set, ... Crawl

Today, I really figured out how to crawl. Daddy better get the house ready because I am ready to move and groove. Watch the video to see me sing and crawl. Watch out world, here I come!

Monday, May 31, 2010

My little man got his first tooth! Woo hoo!

Sunday, May 23, 2010

1st Day at the Beach



We headed out to Cocoa Beach for some fun in the sun on a very hot 92 degree day. We got a late start because we had breakfast at a friends house and then had Katie, Kerlan and Aidan visiting. We finally made it out there by 2:00. We made a quick stop at RonJon's to get Aaron a new big boy hat (he outgrew his baby hat). Aaron did not like his new hat or his sunglasses and kept pulling them off his head all day. Michael spent most of the afternoon catching up on long needed sleep. Serena attempted to make sand castles, but the sand was too dry. She went back and forth getting water, but never was able to build a sand castle. She didn't seem to mind too much and decided she would just dig and fling sand all over everyone instead. Little Aaron thoroughly enjoyed himself. He mostly people watched. We went into the ocean and he liked getting his feet wet. After a couple hours of watching Daddy sleep, he decided to take a nap as well.

Saturday, May 15, 2010

Grandma Cindy's Vacation



Grandma Cindy came to Orlando for a week for vacation! Where does she get all her energy. The first night she was here, she taught us how to play Mexican Train. Saturday, we all went to the coast for lunch and watched the cruise ships and went to the fresh fish market. Then we came home and she made fish for dinner and homemade carrots, peas, and squash for Aaron. Sun - Magic Kingdom. Monday the two Grandmas went on a wild adventure to Cocoa Beach. Tues - Epcot, Wed - Cocoa Beach, Thurs - Animal Kingdom, Fri - she left early in the morning.


Grandma Cindy's Vacation

Click on picture to view more photos of our fun vacation

Friday, May 7, 2010

First Playdate



Aaron had his first official play date today. Ashley came over to play. They had a great time. They talked baby talk to each other. Aaron played with her feet, feed her her bottle and gave her a kiss on the hand. He even rolled over on to be next to her. What a little flirt!