Friday, January 27, 2012

Parent attachement to IEP

How does this sound? Over kill or useful information?




Abraham was born at 26 weeks gestation, weighing 2 lbs 2 oz by emergency c-section. His breathing tube (ET tube) dislodged during flight, causing oxygen deprivation. As a result of his extremely premature birth, Abraham has grade IV bilateral bleeding that extended into the gray matter of the brain resulting in cerebral palsy, hydrocephalus (VP shunt placement,right side of head) and cortical vision impairment. Other diagnoses include stage 2 retinopathy of prematurity (ROP), bilateral nystagmus, hypothyroidism,chronic lung disease, constipation, tooth decay, eczema, GERD, delayed swallow however no recommendations to thicken liquids as he was deemed "able to protect his airway". In addition he has global developmental delays including gross/fine motor skills and speech.

Most of the damaged happened on the left side of the brain therefore he is weaker on the right side of his body. He keeps his right hand tight and contracted sometimes however other times he does relax it. His legs have been tighter than normal lately and increased tone especially with diaper changes, bathing and dressing. The left leg tend to cross over the right leg. He has clonus in bilateral lower extremities

Abe is 3 years old however he can not sit with assistance. Therefore can not stand. He depends on adults for assistance with mobility and feeding. He is able to sit in a reserve "W" position however this should be discouraged due to the potential damage to his knee and hip joints. He can feed himself small pieces of food however adult assistance is required since he throws food and silverware on the floor. We don't want him to continue using the same fork or spoon that has been dropped on the floor. Please get him a new one or make him use his fingers. We have not started potty training yet however he has started to acknowledge it. We would require some PT or OT recommendations about this for proper positioning.

Abe bangs if he is trying to communicate, tired, does not feel good and occasionally to the rhythm of music. Most of the time he does this he is crying screaming but sometimes he giggles as he is doing it. Ignoring him does not make him stop. I have left the room but peeked down the hall and he continues. He will be starting ABA therapy to assist with this.

Things Abe likes: Music, lights, cuddling, cars, trucks, books, slides, hearing other kids, bird noises, duck noises, animal noises. He loves to dance too.

Things that bother Abe: sudden loud noises like a room full of adults clapping, vacuum cleaner noise and some times the sound of a hair dryer. He really does not like to play with sand, grass or snow. He does not like crunchy foods. He will touch crunchy foods just does not like it in his mouth.

Diet: apple sauce consistency foods like carrots or anything hard has to be pureed. Macaroni and cheese is his favorite food, some days this is all he will eat.2nd favorite food: chewy fruit snacks. Yogurt, cheese burgers, mashed potatoes, toast if soft, peanut butter however seems like the eczema increases after he has it (will be checking with PCM about this) small pieces of cut up cheese, pizza (I gave him some of the crust last week on different occasions and both days he gagged and threw up). Beverages: breast milk, whole milk, prune juice, and grape juice.

Hospitalizations (In patient stays):
NICU Madigan: 11 days
NICU Seattle Children's Hospital: 96 days, 2/13/09-May 2009
August 2009; Seattle Children's Hospital: VP shunt placement, overnight stay
November 2009; Seattle Children's Hospital: 14 day stay for pneumonia and H1N1
February 2010; Seattle Children's Hospital: 2 in-patinent stays during this month for respiratory virus
June 2010;Seattle Children's Hospital: respiratory virus
September 2010; Phoenix Children's Hospital: 7 day inpatient stay for flu

Surgical History:
March 2009: external shunt
August 2009: Internal VP shunt placed
August 2010: bilateral hernia repair and orchiopexy

Sunday, January 1, 2012

2011 recap

Happy New Year 2012. Since I did not write a Christmas Letter for 2011 I thought I would blog about the highlights for this year. The biggest things that happened: Glenn came home from Diego Garcia and is finally on shore duty, we moved into a brand new house that is single level and the builder put in wheelchair ramps instead of stairs. We love our new house and Abe has thrived here. The third biggest accomplishment was that Abe did not require any inpatient stays for all of 2011. So now month by month recap of highlights. January: Glenn came home briefly since I had gallbladder surgery. The surgery went well with only minor complications: an allergic reaction to the blue dye that was in used in surgical prep. My abdomen looked as red as a strawberry and itched like crazy. My mom came to visit and both her and Glenn were here to celebrate Abe's 2nd birthday. February: Glenn left on Abe's birthday back to Diego Garcia. Our 5th wedding anniversary was on Valentine's Day. Oh by the way in 5 years of marriage the only anniversary we actually were face to face with each other was our 3rd. This day I remember well. Abe had just transferred to Children's hospital NICU the day before. Dr. Lauren had to share bad news with us but Glenn and I were together. Our 6th anniversary should be great because Glenn is not deployed and Abe is healthy. March: Abe and I went to the women's retreat for our 2nd year. If I go in 2012 I will probably be baby free for the first time. The guest speaker talked about the fact that she was not able to bear any children of her own but she was a spiritual mother to a young lady. This brought her a lot of joy and she was able to overcome her grief of being childless. Although completely different this made me think about the grief associated with having a medically complex kid. I go back in forth on this but maybe God really saw that we could handle it and give Abe a good environment to grow and thrive. Abe is doing amazing and I am so thankful for him. April: Abe joined Starlight Children's Foundation. This has been a huge blessing for us. It helps us cope and meet other families that endure similar things as us. We celebrated Easter with a military family plus their extended family. I had an MRI that revealed a diverticum on my urethra. May: I applied for Extreme Home Make Over. I got excited when I received an email inquiring more about our situation. Thank you for all your support and recommendations. They blessed another military family. June: Glenn returned home. July: the house hunting began. Originally we were looking Bremerton and only north from there. Good thing we broaden our location to south of Bremerton because there laid the perfect house for us. Glenn started working at IMF. First shore duty in 17 years. August: We met a mom that has a daughter with hydrocephalus at Baby Jamboree. She told us about the Gig Harbor MOPS group. This group worked better with our schedule and the distance is closer than the PBF group. We attended the Starlight/CPK picnic and went to the zoo. It was a long day but such a great one. We closed on our new home. Abe received much needed medical equipment including: a stander, wheelchair and an activity chair (similar to a high chair but for bigger kids) September: We moved into our new home. Thank you all who helped during this process. October: My mom came to visit. We went to a pumpkin patch. I had the diverticum removed from urethra. The recovery was rough and placed a huge strain on our family. I am happy to say the urinary tract infection issue is now solved. The diverticum is an extra pocket of skin tissue that would collect, urine and bacteria which caused all the multiple infections. MOPS moms were amazing at taking care of my family then. Thank you so much for the meals, for helping with Abe and the play date. We took our cats, Angel and Cali to a shelter since we were no longer able to care for them due to Abe's needs. We are pet free now. I am hesitant to get an animal again but Abe loves dogs. Maybe down the road a therapy dog but for now we are happy to be pet free. November: surgery recovery, Glenn started a van pool to and from work due to the cost of gas. Abe and I both got very bad colds this month. December: Glenn will be starting a new division at work next month. Work on the Bremerton house began. New flooring including hardwood and carpet, paint, and the garage has a new roof. The house is almost ready to go on the market. I had an appointment with Dr. Banks, doctor who did my c-section, said there are no contraindications for having any more pregnancies but it won't come without risks due prior 2nd trimester delivery,the arucate uterus and my age. We are still considering trying for another baby but we want our Bremerton house to sell and get a mini van first. This year still involved a lot of challenges and changes for our family but also a lot of blessings. We are hoping 2012 will be a good year for us and we can finally get unpacked and settled in our new home.