November 30, 2009

WOW I can't believe a entire month has flown by. Let's see Kristin lost her first tooth and is working on her second one. Joshua is difficult to handle some days. He is always hurting his head. He has had a full evaluation done on his hearing...he passed with flying colors. This Thursday he will go have a cookie swallow done and next Tuesday is his Upper GI then on January 21, 2010 he will go and have a behavioral evaluation done. His temper gets the best of him some days. We had a good Thanksgiving even though Kristin was with her dad. Joshua didn't eat much. Oh that's another thing Joshua went and saw his GI specialist and he prescribed MIRA LAX once daily to help his bowel movements. I always feel as if he is at one doctor or the other. Now our weekly routine is as follows..Monday 9:15am-Speech then Wednesday 12:45 OT and at 1:45 Behavioral. And everyday at 3pm when I picked up Kristin from school her girlfriend comes home with us until 6pm. By the time 8pm bedtime rolls around I am ready for bed too. We are waiting to see if we qualified for funding for a weighted blanket and trampoline for Joshua to help with the sensory disorder. Until next time take care yins....

Oct. 26th 2009

Hey yins...well last wed. Joshua had his first OT session and we wont know until he has a few more what all they will consist of, but he likes his therapist so that is a major bonus. We went to my friend's little girls birthday party on Saturday evening and Joshua, well he thought he would be spider man and fell , busted his right ear and the side of his forehead. He's got a large black bruise and his temple area and his right ear is a little bruised. i swear that boy is going to give me a heart attack before I am 30 years old. Halloween is approaching faster than I wish...Joshua is going to be ELMO and Kristin...TINKER BELL. that is if she doesn't get any worse with her new cough. I am doing good selling Avon...please anyone who visits this site, take a peek at my Avon one too. Well it is late and I am exhausted so until next time.....

October 18, 2009

Let's see, Kristin is excited about Halloween and Joshua was diagnosed with yet another disorder. Joshua still has Speech therapy but no longer has Physical therapy. We start Occupational therapy this week for his newly discovered Sensory Disorder. In November, he has his third hearing test to see how his right ear is and also an appointment with his GI doctor. Over the last few months Joshua has experienced bouts of extreme diarrhea that then change into extreme bouts of constipation. He will scream for 45 minutes trying to pass a stool. It isn't normal for him to have to push that hard for a bowel movement. Joshua doesn't talk very well, it is hard to understand him. So days are better than others. He is short for his age and has a head that seems "big" for his little body. After all that this little boy has been through, he still smiles almost everyday. I watch him and wonder, what will his future hold and will he ever be "normal". I know that no matter what life throws at him, he will always get through it. Thanks to Joshua I know that I can get through anything. His father and I are very grateful for him, we know he will over come his battles, it might take a while but we work as a family. Joshua is our little hero. And tomorrow is another day....

2009 catching up to now...

This year so far has been eventful, Dave and I were married on April 13, 2009. We had a small private wedding with the kids right there with us. Kristin turned 5. Joshua turned 2. And we moved back to Pittsburgh at the end of July.

Kristin started school. She loves it. Joshua's favorite part of the day is when she gets home from school and he has someone to play with. The move has been good to all of us. Joshua is now closer to his hospital.

Rest of 2008

Joshua also ended up needing Speech Therapy along with the Physical Therapy. He started walking shortly after his first birthday. We were finally able to have him circumcised in May 2008, shortly before his first birthday.

Joshua's 1st birthday

May 30, 2008....the big 1. We had a small birthday party for Joshua and Daddy. They shared the cake, which had Mickey Mouse on it. It was nice a day to forget all about any problems that still existed. We reminisced about the last year and all that we had been through. it was a good day.

February 2008

The winter was long and full of PT. By February we had noticed that Joshua's head wasn't shaping correctly. We talked to his doctor about this and once again went to see another specialist who explained that Joshua had Phelgeocephly, flat head. From his right ear to the middle of the back of his head was completely flat. We then began the process of the helmet. We had his head casted, and picked out the design for it. We waited about two weeks and then took him back in and Joshua had his new helmet. He was to wear it for 23 hours a day. Wash it by hand and allow it to air dry. Joshua didn't mind the helmet at all, until about 4 months later. Joshua decided that mickey mouse liked to hide in the helmet more that he liked to wear it. We would go in his room to get him in the mornings and after nap times and always we would find mickey mouse sitting in Joshua's helmet and Joshua smiling at us. By this point his head was definitely better, but could still become rounder, we let him win this battle. After all, he was our little hero, and he had already been through so much.

October 2007

By the middle of October 2007, we knew something wasn't right with Joshua. He wanted nothing to do with "belly time" and he wouldn't turn his head to the left or extend his left arm. We took him in for a check up and talked to his doctor who sent us to Shriner's Hosptail in Erie, Pa. It was there at Shriner's that we learned Joshua had Muscular Torticollis. He sarted Physical Theraphy shortly after. he had theraphy at Shriner's and also at home. Both were once a week each. This contuined on for over a year. It was hard to hear him scream during his streches but we knew it was the best thing for him in the long run.

Joshua's Big Day

Early Wednesday the 30th of May, and I mean early...2:20am Joshua Xavier made his entrance into this world. It all happened so quick that it seemed like we were dreaming. They took him over to the little bed in my room and got the oxygen on him and the wraps with sterile water then the bag on him. Within ten minutes after he was born they had him on his way to the NICU in Magee's and my fiancee, his mother and I all sat there wondering what was going on. We knew that he would be taken to NICU to be prepared for transport to Pittsburgh Children's Hospital, which was only about three or four blocks away. But we didn't think it would all happen so fast.

At around 3:30am they brought our screaming tiny, little baby boy in to see us before they took him by helicopter to his hospital. Joshua weighed in at only 4lbs 4oz and was a whole 17inches long. As soon as I touched his little hand he stopped crying and looked at me. That was the last time we saw him until about 16 hours later. They took Joshua to Children's and got him prepped for surgery.

The doctors were calling to get consent to operate and for blood transfusions and sedation all by 4:30-5am then they called around 8am to let us know that he came out of surgery fine and had a silo in place. They had him on Valium and morphine for about 2- 3 weeks.

During that time Joshua had 4 blood transfusions and lots of IVs and medicines. They shortened his silo a little everyday but one. They slowly weened him off the morphine and Valium and onto Tylenol. We were very lucky, Joshua only needed to be on a vent for a few hours after his two surgeries. By his 2 week birthday, Joshua's bowels were back inside and his poor swollen stomach was closed. His defect was so large that they had to use surgical mesh to help close his little belly.

We were fine with him not having a belly button, so we never asked for them to make him one. We figured that was his scar, his trophy for all his bravery that he showed us from day one.
Joshua stayed in the hospital for a total of six weeks. He did good with the TPN and when they finally introduced oral feedings, he adjusted well. He always tolerated the 5cc's and then daily the 5cc increases.

Joshua showed us how strong he was from day one...on July 12th, 2007 we welcomed Joshua home and introduced him to his big sister Kristin (age 3 at the time). She waited so patiently for him to came home. He was so small though, Kristin thought he was a new baby doll for her, until he woke up.

Final trip to the Burgh'

On May 28, 2007 my fiancee Dave and I went to Pittsburgh for our appointment on May 29. We arrived late evening on Monday, Memorial Day and also Dave's birthday. We went and got a bite to eat, headed back to our room and tried to wait patiently for the next morning.

We awoke early on Tuesday, and got ready to head to MaGee's Womens hospital in Pittsburgh. We were scheduled for an amniocentesis at around 8:30 am. When we got there it seemed like forever before they got us back to the sonogram room. Once we were back there the student tech took some pictures and then left the room to get the doctor. We really didn't think much of it until the doctor came back in the room with one of those looks on his face. He explained that he wanted to take a look at the baby and do some measurements. After what felt like forever, he looked at the nurse and told her to let the upstairs know that we were on our way up. That is when he turned to us and explained that Joshua had almost no fluid around him and that I was being admitted and induced now.

Away we went, upstairs and then it seemed as if things started to move in slow motion. They got me all hooked up to the monitors and IVs, they started giving me the potocin to help the contractions come sooner, gave me medicine to help dilate my cervix more. We made our phone calls to family and friends and knew that this was the start of a long road.

November 2006 through May 2007

Near the end of November 2006, my then fiancee Dave and I were told we were about 7 weeks pregnant. Exactly two days later we went in for our first sonogram and it was then that we learned that we were really 12 weeks pregnant and that the baby had gastroschisis. At that moment our world started spinning so fast that we had no clue what to say to each other, or our families. For Dave, this was his first born and the first grand baby on his side. For me, this was my fourth pregnancy but only my second one to make it this far. So began our long six months of being monitored monthly, bi weekly, then up to twice weekly. We lived in Erie, PA during this time but had to travel back and fourth to Pittsburgh, Pa to see specialist. The rotten part of that was we had just, one month earlier, moved from Pittsburgh to Erie.

Now...

Joshua is two years old and gets into anything he thinks he can get away with. He loves when his big sister gets home from school every afternoon. Joshua still battles everyday with problems going to the bathroom. Some days are easier than others. He also has speech delays and hearing issues. Just last week we were told that he also has sensory disorders and now not only needs speech therapy but now we add occupational therapy to our weekly activties. Joshua has days when we forget there are any problems, but just when it feels "normal" he gets a "bad belly". Joshua is very outgoing, he loves to push my buttons on what he is allowed to do and not allowed to do. As I get better at this and have a little more time I will tell of his start in life and what has led us to this point. It has been a long road and we know that it might just be the an even longer road.

Joshua at birth and one day old..

The reason

Hi my name is Kasey Butler. I am the mother of Joshua Xavier. He is 2 years old now and was born with Gastroschisis. This is our story.