Sunday, July 5, 2009

THE PICKELL CASTLE

The boys got a new playhouse, or castle I should say and have been basically living in it since Friday!






Jaxon decorated it with dinosaurs and even added his Spiderman couch so they have a lounge spot. Jamie is fascinated with opening and closing the door, and has mastered the sentence "I play outside, Mama" here are just a few pics of our weekend fun.










GREAT WOLF LODGE, GREAT FUN!!!!




My mom decided to take her kids and all her grand kids on a vacation, destination....GREAT WOLF LODGE, SO much fun.



Jaxon's primary goal was MagiQuest, where you purchase a "magic wand" and go on quests and adventures throughout the entire 8 floors of the hotel with your final quest being a chance to slay the dragon! Jaxon was off with his cousins and I didn't get to see him much LOL



I thought it would be a good idea to get Jameson a "wand" too so we got him a soft sword and he thought he was tough stuff for about an hour, he would point that thing at every single thing we came across, including trash cans, he then realized that this wand did not open treasure chests or allow the pixies to talk to you and he was "ALL DONE" and determined to get a real wand and lose the baby stuff. Off we went to get Jamie a wand and he was in magi heaven!!!


The water park was awesome, my little jaxon had no fear and rode every single water slide he was tall enough to ride, even trying the biggest one, just in case, but promptly reminded by staff the he was too short. (shucks) lol


Jamie got some water action too, we attempted (only once) to let him go down the little bitty baby water slide by himself, he went under of course, bonked his head on the soft padded slide and exclaimed "ALLLLLLL DONE!!!" The wave pool was a big hit with Jameson, he thought the huge (not really) waves crashing on his tummy was great fun. We also did Crooked Creek which is a lazy river where he and I shared a float and lounged around.
He was busy the entire time. The little guy woke up at 6am both mornings, the first morning he walked out of our room into the living room and SHRIEKED "WHERE'D NANI GO?" which equaled good morning all!! The second morning it was "AIRPLANE" and again, all were awake.
Jaxon had alot of fun hanging with his cousins, riding rides and going on all the little magic adventures, he was unstoppable.
Thank you mom for the amazing vacation, i don't think we could of gone to a better place for all 5 kids. They all had such a good time, cant wait for more pics... I will add them to this post as i get them



Monday, June 22, 2009

Happy Birthday Rose

HAPPY BIRTHDAY ROSE









































Just a few random words for you (kind of inside jokes) lol
1. Pizza
2. Edward
3. Barn
4. Night Fishing
5. Burning Ice
6. Budweiser Superfest (do you remember this?)
7. Texaco
I love you girl, am glad you had a great birthday and wish I could of been there to celebrate with you. Hopefully, there will be a Have a Heart for EB event in February and we can all get together.










Wednesday, May 20, 2009

For those who dont know!!!

Jameson has been walking for over a month and we are SO EXCITED!!! He is an amazing toddler and loads of fun. His favorite things are keys, bubbles, music, dancing and swimming. He is a chatter box, just like his mommy and is very independent. He says "i do" when it comes to anything from brushing his teeth or his hair to getting in the carseat and trying to buckle up! He is a very determined little guy and he makes us laugh every single day.


Here is the video of him when he first started walking.......


video

Jaxon has finished Pre-K and will start Kindergarten in August. He is a daddys boy for sure and looks and acts just like him. I often wonder if he is going to be a Comedian, he is a pratical joker, and loves reading, dancing, and swimming. He is such a big boy and will turn 6 in October, wow how time flies.He is my little helper, and adores his baby brother. Here are some of the latest pics of JAX

Friday, May 15, 2009

GOOD FRIENDS, FOOD, AND FUN!




Today we spent the afternoon with our Floridian friends, Rose and Colin. Such Fun!!! We met at Mesa Rosa, yum! The boys did well with each other, Colin nicknamed Jameson "J.J.", too cute..











































After lunch, we went to Jungle Java, the boys were thrilled and they had lots of fun.















I love my dear friend Rose, and little Colin and didnt realize just how much I miss her until it was time for her to leave :~(








































































Monday, April 20, 2009

SUMMERTIME












We spent Sunday at my parents house, they built a treehouse for the grandkids so we went to check it out. Jaxon had a blast, he probably climbed the rock wall over 50 times, and he enjoyed hanging out in the fort. Jameson played in the "pool" (our old sandbox) lol and thought he was REALLY cool and such a big boy! Here are some pics of such a wonderful day
























































































































Monday, March 30, 2009

A DAY AT THE WACO ZOO




What a great way to wrap up Spring Break! We had a blast, we spent the entire day at the zoo with my mom, sister, nephews, and neice. Jameson LOVED being outside and Jaxon enjoyed time with his cousins.













I think the Giraffes were my favorite, they were SO close!















Jamie's favorite part was the PLAYSCAPE, he kept asking "again, I play, more??????" FUN FUN












I guess Jaxon's shorts were a bit too big lol











SWEET BOY











My butterfly boy!











BFFS (for the day) end the long fun day with a hug

Wednesday, March 4, 2009

Epidermolysis Bullosa































Jameson was born via C-section on August 10, 2007 with Dominant Dystrophic Epidermolysis Bullosa, which is a rare genetic disease characterized by the presence of extremely fragile skin and recurrent blister formation, resulting from minor mechanical friction or trauma. An estimated 1 out of every 50,000 live births are affected with some type of EB. The disorder occurs in every racial and ethnic group throughout the world and affects both sexes equally. (from Debra.org)















I had a pretty good pregnancy, was diagnosed with Placenta Previa very early on but it "corrected itself"??? and really wasnt a problem for too long.












Jameson was born with billateral club feet and looked perfect other than that. By the time he was taken for his first bath and the ankle bracelet was put on, my family immediately noticed some skin breakdown, the bracelet caused his first blister, he was diagnosed his second day of life with Epidermolysis Bullosa.











The first night, Jameson got to sleep with me, he slept on my chest and I noticed he wasnt feeding properly from his bottle, seemed to have a problem latching on and sucking, when I informed the nurse, she was extremely rude and said "Well he NEEDS to eat and he is FINE" Jameson also had Tracheo Laryngo Molacia, which meant everytime he DID suck from the bottle, you could hear a LOUD squeak, of course at first we didnt know what this was either....





Laryngomalacia
From Wikipedia, the free encyclopedia

Laryngomalacia (literally, "soft larynx") is a very common condition of infancy, in which the soft, immature cartilage of the upper larynx collapses inward during inhalation, causing airway obstruction. It can also be seen in older patients, especially those with neuromuscular conditions resulting in weakness of the muscles of the throat. However, the infantile form is much more common.


In infantile laryngomalacia, the supraglottic larynx (the part above the vocal cords) is tightly curled, with a short band holding the cartilage shield in the front (the epiglottis) tightly to the mobile cartilage in the back of the larynx (the arytenoids). These bands are known as the aryepiglottic folds; they create the movements that opens and closes the vocal cords for phonation. The shortened aryepiglottic folds cause the epiglottis to be furled on itself. This is the well known "omega shaped" epiglottis in laryngomalacia.
Laryngomalacia results in partial airway obstruction, most commonly causing a characteristic high-pitched squeaking noise on inhalation (inspiratory stridor). Some infants have feeding difficulties related to this problem. Rarely, children will have significant life threatening airway obstruction. The vast majority, however, will only have stridor without other more serious symptoms.
The conventional wisdom about laryngomalacia is that the noise is more pronounced when the patient is on his or her back (with gravity making the epiglottis fall backwards). This, however, is a more common finding in older patients rather than in infants.

Causes:
Although laryngomalacia is not associated with a specific gene, there is evidence that some cases may be inherited.[1][2]

Prognosis:
Laryngomalacia becomes symptomatic after the first few weeks of life, and may get louder over the first year, as the child moves air more vigorously. It generally resolves spontaneously by the second year of life.

Treatment:
In rare cases, surgery is necessary. [3][4][5] Most commonly, this involves cutting the aryepiglottic folds to let the supraglottic airway spring open. Treatment of gastroesophageal reflux disease can also help in the treatment of laryngomalacia, since gastric contents can cause the back part of the larynx to swell and collapse even further into the airway. In severe cases, a temporary tracheotomy may be necessary.





On day two the Pediatrician came in to visit us, I informed her that he got a "sore" on his ankle from the hospital band and that he WAS NOT eating properly, she looked him over, told me she thought he may have EB and wanted him transfered to St. Davids Hospital in Austin.











Having had a c-section I still had two days left in Georgetown Hospital for myself, but refused to stay while they were transferring Jameson to Austin, so I signed myself out, and followed the ambulance to St.Davids.......













The skin biopsy they took off of Jameson's foot caused the next few blisters, at this point, he was in the NICU, laying on sheepskin, and we were unable to touch him for the first day, they wanted to keep him monitored for signs of infection, and he still was not feeding properly which was a huge concern, they had him on a feeding tube, antiobiotics, and constant pain meds via IV. The staff of course was not familiar with EB and did the best they could, they told us he couldnt wear clothes with snaps, buttons, zippers, etc and were concerned about the possibilty of him not being able to wear diapers. Jameson stayed in the NICU for 5 days, which were the worst 5 days of my life, we constantly worried about infection, more skin breakdown, and how in the world we would be able to treat his clubfeet with the HORRIBLE skin condition. We found out later that Jameson is mild, although we werent aware of this until he was home and started noticing the skin breakdown and blisters were occuring less often, and werent as severe as in the hospital. Almost as if coming home was the best thing for him, at least thats what I like to think.












When Jameson came home, they linned his carseat with sheepskin, told me that anytime he was laying down he needed to have the sheepskin under him, EVEN when we were holding him, this however lasted for maybe two days and then I made the decision to try to hold him and lay him in his bassinet without it. Jamesons skin was amazingly well, and he looked better every single day.













Now, we had to face the scariest part for me, Jamies clubfeet. The first orthopedic surgeon we went to was a jerk, to put it nicely. He was not eager to start treatment out of fear of the skin and told me, "well give me a call in 3 months and remind me off all this again and we will go from there." I left the office and cried and cried, needless to say we didnt use him as Jameson's doctor.












Dr. Williams, was referred to us by my husband's uncle who is also an orthopedic surgeon (not pediatric however) and he has been a blessing! He immediately got us in touch with THE BEST PHYSICAL THERAPIST, and she began excersizing Jamies legs, and wrapping his feet in a corrected position, well at least as "corrected as they could get with just ace bandages" she is our ANGEL and has helped me with many obstacles along the way. Once we were certain that he could withstand the bandages, we moved up to Ponsetti casting, this was the probably the sixth worst day of my life, although his skin appeared fine, he was miserable, he cried for at least 10 hours straight, I was CERTAIN he was in pain, the doctors assured me he was just "protesting" I wound up spending the night at my mothers and we stayed up all night crying and trying to get Jameson as comfortable as possible. The next morning I put Jamie in the tub and soaked the casts off, I KNEW there was going to be massive skin breakdown and blisters and I couldnt handle not being able to see his skin, As we pulled the casts off layer by layer, I realized by the grace of GOD his skin looked perfect! After 6 weeks of ponsetti casting, and six casts being kicked off by "baby houdini" the next step was his first surgery, double heal cord lengthening, surgery went pretty well, although once he came out he had almost completely lost all of his vocabulary. He healed well, with no skin breakdown and he remained in hard plaster casts for 6 weeeks. After the six weeks he went into boots and bars, not fun. Jamie consistenly would kick the boots and bars off and it was a constant battle to keep them on, needless to say the boots and bars were unsuccessful and we went back into plaster casts after two more surgeries, Jameson is currently in casts! We get the casts off March 31st, and go into AFO braces during the day and back to boots and bars for bedtime for the next 3 years. We are optimistic and hope the boots and bars will stay on this time and be effective. Here are some pics of our journey so far:



































I thank God daily that Jameson was BLESSED to be so mild, my heart breaks for the children who are majorly affected by this devastating disease.