Thursday, August 21, 2008

Daniel James "Danny"

Danny was what I say our planned oops. We had such a hard time trying to get pregnant with Avrianna that I though it would take us just as long to get pregnant again. When Avrianna was 5 months old we started the process once again and much to our surprise the first month it happened!! It was scary and wonderful all in one. I had a baby that was still a hand full and then one on the way. I was overjoyed mostly as I was told I wouldn't be able to ever have children so this second time was a blessing and I never wanted Avrianna to be an only child.
My pregnancy didn't go smoothly at all with Danny. Danny was due in January of 2004 but I started contractions in September of 2003. YIKES! So after stopping labor MANY times and steroids injections,to hopefully prepare him just in case we weren't able to stop them, we were able to hold it off till 37 weeks. I was terribly miserable and had gained over 100lbs with this pregnancy. My body had enough!
Danny had an induced labor 3 weeks early and he weighed in at 9lbs. 1.9oz and was 21" long. During delivery things went wrong, he was delivered with no pulse and not breathing. The doctor and nurses preformed CPR right there on my bedside. They intubated him in the room and off he went to the NICU, but not before I touched his little hand. I so longed for the moment that my baby was going to put on my chest as with Avrianna being premature she was whisped away right away too. He had a rough road to say the least as his brain started to swell and have internal bleeding, then the seizures started. I think I went into shock, I couldn't believe what I was hearing and after awhile I stopped hearing everything. All I could do is sit and cry! Danny was unable to eat, and do everything a newborn should, he was "broken". He sustained left biracial plexus as they needed to pull him out once they realize things were not ok. After a month in the NICU at a local hospital he was sent home for us to care for.
Danny has an extensive and wonderful team of doctors, from Children's Hospital of Wisconsin, now working to help him have a quality of life. There are 13 doctors on his team now with the hopes that we won't have to add any more in the near future. With Dr Kasper being our primary already with Avrianna I say Danny was his BONUS! He is a wonderful man and great doctor. I truly believe our family wouldn't be where we are today with out all of his help.
Danny has anywhere from 10-15 diagnosis/conditions depending on his health status. Most of the them are:

Hypoxic Ischemic Encephalopathy (lack of air and blood to the brain) ~Severe Spastic Quad CP (type of Cerebral Palsy that has stiff tone in all 4 extremeties)~ Seizures~ Clonise (limbs continue to jitter)~ Kyphoscolosis (back bends forward and to the side), Laryngo & Tracheal malacia (floppy air way which helps with the respitory probl~ms and aids in him not eating)~ Left Broncial malacia (opening on left side of lungs are small and weak)~ Cortical Vision Impairment (Brain doesn't comprehend what the eyes see)~ Optical atrophy (both nerves from eyes to brain damaged)~ SIADH (body doesn't regulate salt levels, COPD & Sleep apnea (chronic obstructive pulmonary disorder),~Hydronefrosis Kidneys (bladder backs up in kidneys causing infections)~ Chronic Ear Infections~ Weak pulmonary toilet(unable to clear lungs & airway)~ Unstable temps~Precocious Puberty(already in full blown puberty) ~ Trache ~ SMA syndrome (artery feeding into stomach isn't working properly) ~ Hanging Right Hip (Girdlestone procedure = they cut half the femur bone and the ball off)

Dannys has 13 different oral medications that he takes 2-3 times a day. He has a Baclofen Pump implanted in his stomach area that has a catheter that runs up his spine. That administers the drug directly in his spinal fluid to help reduce the tone in his body. Danny now uses a Bipap at night to help not obstruct while sleeping and using the PT vest and the Cough Assist during the day to help him move his secretion out of his lungs.

He has had MULTIPLE MULTIPLE (somewhere in the 30's) surgeries, all of them performed at Children's Hospital of Wisconsin . Which some of them were a feeding tube, the Interathecal Baclophen pump, ear tubes, opening up his air way(Superogtollplyasty), closing off the stomach to the air way so he doesn't have acid reflux so bad (Nissen or Fundoplication), Tracheostomy (breathing tube in his throat), hip (repair of a dislocated right hip) , Girdlestone (removal of part of his right femur bone and all of the hip) and others to help diagnosis or maintain his conditions. Danny had the VEPTR II rods put in his spine to correct his severe lower lumbar scoliosis

Danny has Physical, Water, Occupational, and Speech therapies that all come to the home once a week with the exception of the water. He has Vision therapy twice a month and mobility therapy that comes four times a year. He has been successfully working with a power scooter that he can work with a head switch. That is showing us that he can/might understand commands. He really enjoys playing in his stander, the pool, and his swing which is in the ceiling of our home.

Danny was granted a wish from the Make A Wish program. He was giving a new big boy bed. Which is an adult crib built around a hospital bed that vibrates and moves at the head and foot. The crib was built by Steve Lockhart a local man here and the hospital bed with memory foam mattress was from Verlo. I can't Thank all the helped make Danny's dream come true enough. He LOVES his bed!

We take trips to Florida about twice a year where Danny and his sister love being in the pool and warm weather.

Well I think that's it in a nut shell. He continues to be our ray of hope. I will never be able to teach him as much has he taught me. Danny's health is always a roller coater ride so please stop in at our site and see what we are up to next. Thank you again for following our story and keeping us in you thoughts.

See how much he's grown up!

Pic 7-2010

Pic 9-09

Pic 9-08

Pic 2-07

Pic 9-04
Pic 3-04
Pic 12-25
Pic 12-23


Nikki said...

Wow, what a touching story and an amazing little boy (and an amazing family!!) Children with special needs can bring such joy to life... When I was volunteering in the Dominican we helped out at an orphanage for children with special needs. Many of them couldn't sit or walk or talk, but their smiles were so joyful and I think of them whenever I am feeling down!


Anonymous said...

Lori, I'm so glad to reconnect with you via facebook. I just checked out your blog and think you are a great mother. God has given you amazing strength. I look forward to learning more.

Betsy (Marcy) Wilson