2009 Another Year!

I have been overwhelmed in dealing with my children's chronic illnesses the last two months, so I am behind in posting. We had 11 hospitalizations during 2009 with most of them during the past 6 months. After being on the road so much with doctors and hospitals, I was blessed to stay home and just sit on the couch this Christmas so to speak. I actually read a book for the first time in a long time, Code Orange. The story is interesting if you like a medical mystery. I know. Of all the books I could choose, why that one? It happened to be given to me by someone at the hospital.

It has been quite a year of blessings, trials, and tests of patience and faith.

Gabriela stabilized from her Bipolar and has made progress in school along with quite a bit of growth in height as she grows into a lovely young lady.

Joshua learned how to read, shared his interest in history and "old" things along with his desire to learn about dinosaurs, rockets and to become a pilot one day.

Shawna wants to be a "blue" doctor, a gymnast or dancer, and has an incredible love for horses and reindeer (particularly Rudolph). Her favorite songs are Rudolph and Oh Christmas Tree. She grew 3 inches this fall and grew from a size 10 shoe to a size 12 shoe.

Joseph is learning to spell along with constant work on ABCs, 123s, colors and shapes; Joseph had his 4th open heart surgery during which he received 3 units of blood and 1 unit post surgery (4 total) and came out with a parlayzed diaphragm and a bovine tissue patch which the surgeon failed to tell us about. (That is another story all in itself for another day and another post). We transfered all our care back to CHOC. He lost 5 pounds during surgery and is not gaining weight; we are trying to get him an appointment with gastro. We were all glad when his pneumothorax (collapsed lung on the right) cleared up, when his pleural effusion (fluid around the lung on the right) cleared up, and when his pulmonary hypertension was back under control. He has to work harder to breath now that his diaphragm does not work. He also has to cough more often to keep fluid out of his lungs and keep his lungs open. He is just so skinny. I can wrap my thumb and pointer finger around his biceps quite easily.

Michael has endured many medical battles this year and continues on chemo and a slew of medication to keep him stabilized. His kidneys, thyroid, growth, seizures, lupus and anemia continue to be big concerns. He made it through chemo this month without vomitting a single time; praise the Lord. He started having seizures again (3 on 12/20 and 1 on 12/23) along with increased muscle tremors he cannot control; neurology had to increase his Topamax. He is retaining quite a bit of fluid as his kidneys do not seem to be doing well; his eyes are swollen most days the past 2 weeks along with his legs and knees despite the Lasix. His last hemoglobin on 12/21 was 7.8 (quite low, normal is 12); walking even short distances seems to wear him out. We still have not received a wheelchair as ordered by orthopedist, pediatrician, and rheumatologist. He collapsed at CHOC walking from St. Joseph's to CHOC, which is literally across the street. The hematologist is concerned he may need a blood transfusion and asked for STAT repeat labs today along with a type and cross for a unit of blood. We will hear more tomorrow.

In the meantime, please keep praying. I worry about Michael who is such a brave soul. He had been seeming to do better, and has been doing worse again the past 2 weeks. I worry about Joseph and his not gaining weight. I praise the Lord for all the small victories, miracles and angels who have touched our lives.

Christmas was a blessing. Our dear friends Laurie, John and family gave the kids gifts, clothes and my first ever live Christmas tree. Believe it or not, I had the least problem with my allergies this year than previously. The tree was a Douglas Fir and recently washed off by the rain, which I am sure helped. My sister Kathy, her husband Jeff, and kids Marisa and Ryan sents all the kids pajamas, socks, underwear, books, and toy. I was thrilled and overjoyed. My personal favorite part was the socks and underwear. Very cool. Gifts only a mom would appreciate. Although, Shawna was so excited over her new clothes that she literally had to try on every single thing undies included. She was completely delighted. We had the wonderful time of talking with all our different family members and grandparents on Christmas. Dr. Boon, our rhematologist, gave the kids each a Christmas gift. Dr. Pepper (yes the soda) gave each of the kids a gift. A certain wish foundation gave the kids each a gift and Joseph some incredibly awesome photos including a very grand scrapbook specially made for Joseph from his Wish day. Yes, it was blessed. We were glad Santa even made it to our house this year with help from special elves. The children were blessed with more than we could ever have given them. My favorite part was reading the Legend of the Christmas Tree, the Legend of the Christmas Stocking and the Legend of the Candy Cane. Our big TV broke down earlier this year, which has given us the opportunity to spend family time with other activities. Our little TV in the bedroom is difficult to get everyone around. Shawna's favorite part of the Christmas season was decorating the Christmas tree and getting a real tree. She is already talking about how we have to get one and decorate another one for the next Christmas. Scott enjoyed some time to sleep. The kids all enjoyed playing with new toys. I am trying to get in as many deep breaths and moments to de-stress as I can. I even got my hair cut from quite long to shoulder length this month. That was a nice change. My last hair 'salon' cut was quite literally more than a year ago.

Praying for a happy, healthy and faith-filled New Year in 2010!

Merry Christmas. For Christ Our Savior is the reason for the season. Jesus is our True Blessing.

Happy New Year! Please be safe.

Jennifer
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"All things were made through Him, and without Him, nothing came to be. Whatever has come to be, found life in Him" John 1: 1-18