The Wheels on the Bus

Abe is making leaps and  bounds. He recently started taking the bus to school. The first day was so rough on both of us because the bus was here so early. Today he had an appointment to address his chronic constipation and to fill out EFMP renewal paperwork so he missed school. He said "car seat", "bus" and "go". I told him that he is not taking the bus today. Last week he said "car, car, car as he looked at the window when were having lunch and then he said "bus". Sure enough a school bus had just drove by. He also points out "trees" as we are driving, asking for "fries, fries" if he knows we have some and says "momma sit" while he pats a surface like a chair, the floor or the bed. He is making such huge strides. At school he was staying in his wheelchair during playground time due to damp and wet grounds,but now the ground is drier he is riding a little trike that has made modified. He initiates some of the pedaling and asks to use it daily. We are working on getting a bike for him for home use since it will help with neurological development plus since he does not walk the motion will help with the constipation.I did notice that he leans way over on the trike so this is probably not the best fit for him but he sure enjoys it. He also has recently discovered outside playing. He plays so hard that he rips holes in the knees of his pants. He also got his first "ouchie" that  he is so proud of. Not to mention the torn up shoes.  He crawled from our front yard to side yard to back yard then I helped him take steps to the front door. He absolutely loves to play outside now. Too bad I could not do my dishes out there and laundry since he does a great job at self entertaining. 

When will the healing come

Abe was born over 3 years ago. Last night when I drove home from AWANAS I saw an ambulance headed south on the freeway. All I could think about was Abe's first ride in a motor vehicle was not cozy in his car seat in the back of the Jeep with me right next to him. Nope it was in an ambulance alone with medical professionals. Shortly followed was his first air transportation in a helicopter to Madigan. Prior to his first "car and plane ride" he was born by emergency c-section. Being told "your baby probably won't survive" Glenn chose to stand outside the OR suite. I heard Abe's cries but did not get to see, touch or hold him. I finally asked as they were stitching me back up. "Is he definitely a boy?" Ultrasounds are not always 100% correct on the gender. The anesthesiologist asked if I could take a look so he was able to pull down the drape. I got a very quick look at my baby. I saw his eyes and the top of his head. Good thing I had my contact lens in. I put them in right before we left to the hospital. I only grabbed my purse, military id, the clothes I had on and my military id. We had absolutely no idea we were having a baby that day. Abe was taken to a room, there is no NICU at Naval Hospital Bremerton. They continued to stitch me up. Glenn got to look at Abe closely and noticed that his arm, leg and butt were black and blue. This is from the trauma of having no amionic fluid and the compression from the cervix. I finally went to the room next to him. Glenn spend time going back and forth between both of our rooms. Since Abraham required CPR about 15 or more people were in the small room so Glenn just stayed with me to be out of the way. One of the pastor's fro our church showed up just as Abe had left. I will never forget the phone call I received from Madigan, asking me if CPR should be continued or not. "He is fighting very hard to not be with us". We briefly discussed it and both decided CPR needed to be continued. I finally got to Madigan. Glenn had some friends drive him. They got to my room. All of us were hungry so we ate. Then a social worker showed up. She took us down to the NICU. The NICU doctor stopped us to let us know the bad news. We finally got to see him 12 hours after birth. At 9 days old more bad news followed. We were told he would be in a vegetative state if he survived at all. I considered stopping life support at this point in time. That night I stayed at the Fisher House and Glenn stayed at the NICU. We decided that someone needed to be with him at all times so he would know he is loved and would keep fighting for his life. I did not sleep that night at all. Glenn got zero sleep as well. So we decided that we needed to take care of ourselves in order to provide for this tiny 2 lbs baby. At this point all we could do was pray, pump breast milk for him and read to him. We were not allowed to touch him or hold him since this would cause his vital signs to be unstable. He required care beyond what Madigan could provide so he was transferred to Children's in Seattle. At 14 days old I got to finally hold my baby but it was brief. It was a roller coaster but I won't get into all the specific details since my prior blog posts say it all and then some. This birth experience was definitely not what I had planned and was not easy. Life with a special needs kid presents different difficulties beyond parenting a typically developing kid would not. I am still very terrified to have another baby but a thought in my head about another one just is not going away. Abe loves other kids and learns from them. I know a few moms that have had some unfortunate situations such as stillborn and hydrocephalus that was diagnosed in utero. Both moms have beautiful healthy baby girls that are incredibly beautiful. God knew what he was doing but I am not sure how to find healing from all the stress and trauma my family endured at this time 3 years ago. Abe truly is a miracle but I am getting more and more people asking me questions like "does he walk". No he is 3 but does not walk. He does try to stand which is beyond what I ever anticipated him to do. He is saying a lot more words too but continues to have a severe speech delay. I am still not sure why God selected us to be his parents. He does make me smile but other times he makes me cry. Any private message advice on how to heal from this trauma would be appreciated.

3 Years Old

Abe just celebrated his 3rd birthday last week. Since he loves the sound of fire truck sirens we had a fire truck themed birthday party. He loved having kids over to play with. Instead of traditional birthday gifts we gave people the option to donate to Bremerton Beyond Accessible Play thru the Holly Ridge website. Bremerton Beyond Accessible Play is a group of parents of special needs kids and special education teachers that are trying to get Evergreen park in Bremerton, WA remolded with new play equipment and landscape. The remolded will take into consideration children with physical as well as sensory disabilities. In addition the goal is to make the park a place where all families can play and have access to the play equipment. For example an active duty military person may have been injured and is not able to access other play equipment to participate with their "typically developing" children. Changing the play equipment at park to be handicap accessible will also allow elderly grandparents that are not as mobile to actively play with their grandchildren. I can not wait for the grand opening after the remodel is completed. Abe continues to amaze us. He is still developmentally delayed but is making huge progress. We decided that he will attend the developmental preschool with all ambulatory kids. He will be the lowest functioning kid in the class however this may motivate him to want to do more things. He will start next week. He recently has enjoyed being in his stander, a piece of medical equipment that holds him in a standing position. It has wheels and he enjoys moving around in a circle. This will help strengthen is trunk muscles. I added pop beads (usually put on bicycle wheels) to the wheels to give auditory feedback while he is moving. He loves them. I know I had them on my bike when I was a kid. I only could find them online and at REI. When I was a kid I think a lot of places sold them. Abe started pool therapy 2 x a month with a new PT. He absolutely loved it. She thought maybe he would last only a 1/2 hour but he did over 1 hour. She worked very well with him. He will continue regular PT as well but only 2x a month since he rotates each week between land and pool PT. The pool PT really helps with his constipation problem too. He has lots of big changes now that he is 3 years old. He sees neurodevelopment, eye doctor and will have a thyroid ultrasound this week. If his thyroid ultrasound shows a normal glan then he will be taken off thyroid medication. We really don't know if his thyroid problem is congenital, related to prematurity or the brain injury. He started the medication while still in NICU. He was left on the medication for 3 years because thyroid hormone assists with brain development so even with normal TSH and free T4 levels endocrine said he would remain on it. Now that he is 3 years old we will make a decision based on the ultrasound results. Here is what is going on with us, I have a 7 mm kidney stone that is in my ureter. I was concerned that my diverticuliticum came back again since I continue to have bladder infection symptoms. Last week I had a lot of pain, of course on Abe's IEP day, and 2 days later a CT scan which showed the deeply embedded kidney stone decided to try to leave. I was put on a medication to help relax the urinary system which makes it easier for the stone to leave the body. Next week I have an x-ray scheduled to make sure it was passed. I would really like to try for another kid. It seems like everywhere I go someone is just about to have a baby or is pregnant. I really think Abe would benefit from having a sibling around 24/7. I am still very nervous but am having more peace about it. We would like the kidney stone to resolve and our Bremerton house to sell before trying for another baby. I also need to lose some weight. Last week I was asked at church "when are you due" and I 100% NOT pregnant. This was a wake up call. After my last surgery it took awhile to get back into normal daily activities plus since we live further away from Abe's therapies I spend more time sitting in the car than I use to. We did walk today since the sun was actually out. I am hoping that as the weather warms up we can get out more. Also I can walk while Abe is in preschool since they want him to be without me in the class. I will update after my follow up appointment or if I know for sure the stone passed.

Parent attachement to IEP

How does this sound? Over kill or useful information?

****VP SHUNT PRECAUTIONS: NO MAGNETIC TOYS, CAN RESET THE VALVE ON THE SHUNT****

***NO LATEX DUE TO MOTHER'S EXTREME ALLERGY***

NKDA/NKA

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

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.

2011

34 months :-)

Happy 34 month birthday Abe. That night when we were on our way to Naval Hospital Bremerton shortly after midnight we had no idea that our son would be born. He is progressing so well especially since we moved in September. He says "hello" now and thinks everything from his hands, baby wipes to toys are phones. Kim, his respite provider thinks he also said "arm" when she put the arm on Mr. Potato Head. He may have said "John" to another kid at MOPS as well. Abe and I are both feeling better. He has a follow up visit with his primary care provider this month. We miss Dr. Gist but his new doctor is great too. He will be seeing endocrine next week at Children's to monitor his thyroid disorder. Also I am almost fully recovered from my surgery and so far no bladder infection issues. I still have to urinate frequently but it is nothing like it used to be. The transitions to the public school districts have began to take place too. He will start in February either in the predominately ambulatory classroom with his former Holly Ridge teacher Erin or in the medically fragile classroom. I am really torn because I don't want Abe to just sit in his wheelchair while the teacher and para chase after the other kids. I was told Abe probably would not have a one on one para educator if you was in the ambulatory classroom. I don't understand why he would not. It just seems like I have been fighting for his kid the minute the pediatrician at delivery told me he probably would not survive. The delivery nurse and OB doctor thought differently and he is thriving now. We absolutely love our new house. We still need to sell our Bremerton house since the mortgage and the fuel cost have become financial burdens. Glenn hired a contractor to do the work. This is also a financial burden but it needs to be done before placing the house on the market. All the carpet has been ripped out of the old house so the pet odor should be completely gone. The oak hardwood floor is being put in. Not sure if new carpet will be put in downstairs or if it will be the hard wood. The kitchen wall has been fixed and it looks great, just needs to be painted. We ask for prayer that our house sells quickly. We really need a generator for our new home since power outages are most likely to occur and the money from the sell would help us with that purchase. On a different subject at MOPS they had a panel of moms of special needs kids and they touched on some subjects that were very close to my heart. One mom also has a kid with hydrocephalus mentioned sleeping issues. This might explain why Abe never ever sleeps thru the night. He only would when he was tube fed all cozy in his wedge in his pack n play next to our bed but that was short lived. She mentioned that brain injury can interfere with the part of the brain that controls the sleep center. I wonder if this affects Abe as well. I have heard that sleeping issues are common for former preemies too. I have started thinking it was my parenting and that I 100% don't believe in the "cry it out" method for young kids. I feel it is appropriate for an older kid that knows better. I have asked some of his doctors but I they all said his sleep study was normal for a kid with brain injury. The sleep study looked for seizure activity and pulmonary issues. Abe was not found to have sleep apnea or seizures that one night that his sleep study was done. It was done 1 year ago about this time. I completely envy those that have 2 years that sleep all night. I function on very little sleep and have since he was born 34 months ago. I would love to give up caffeine but I feel it seems to help be focus and be alert so I can drive Abe to his therapies and medical appointments. I would like to wean myself off of it but I don't think I can do it cold turkey. If I got pregnant again I absolutely would since it decreases blood flow to the uterus. Another topic mentioned, "do friends walk away once you have a special needs kid". I must say some people have walked away. It is very heart breaking too. Could be God only intended them to be there for a short time. Maybe it is because my kid gets sick super easily and used to be hospitalized. He does not get hospitalized now but the common cold does knock him pretty hard. He loses weight, misses developmental preschool and ot, pt and st. Also he is not allowed to play with magnetic toys because it can reset the VP shunt. Magnetic toys are very common among other 2-3 year boys. Thomas the train, Mega doddle, ect. We are very thankful for the friends that have been right there with it through all the difficulties my family has faced since we moved back in 2009, so that they can celebrate our miracle boy that God brought into the world 34 months ago. My next post will probably be our Christmas letter. We still need to take a family photo too. Last year I was on the ball since Glenn was gone I used a June family picture.

Thankfulness 2011

I am thankful for the following things for 2011:
1. Abe has been hospital free, no inpatient stay, since September 2010
2. Our new house complete with wheelchair ramp, hardwood floor and huge yard for Abraham to play in
3. Glenn being on shore duty
4. Abraham's progress which has been significant since we moved in September
5. Friends that stick by your side through thick and thin
6. 40 hours of respite care per month so we get a break
7. That Abe can communicate with oral language and sign language including putting 3 signs together, eat, more please. He also can identify and say ball when he sees it in a book.

That is it for now. I am sure I am thankful for more things but I am recovering from a cold and surgery.

Preconception Counseling Appointment #2

My urinary tract problems should be under control since the diverticum was removed. I had a second preconception counseling appointment however this time it was with the doctor that actually did the c-section and was there for the whole experience. The Madigan doctor was very knowledgeable however she felt the uterus is not heart shaped but rather it was a contraction. The doctor that did the c-section saw the uterus himself and said it is not heart shaped but that I do have an arcuate uterus. Here is a resource, it is a UK website but has useful information that is easy to read http://www.babycentre.co.uk/pregnancy/complications/uterusabnormal/. That being said there is risk of miscarriage or premature labor and delivery however the fact I had a 26 week premature delivery is a bigger risk that the actual shape of the uterus in his opinion. He did not say that we should not have another baby but it won't be without risks. Some of those risk include premature labor and delivery and Down Syndrome due to my age. The medications and the surgeries I have had are not an issue with the timing of when to try to conceive. The things I was advised to do before conception include taking prenatal vitamins daily, which I used to be very good at doing but have significantly slacked over the last few years, check rubella immunity since this can be cause severe problems for a developing baby, tetanus shot since my is outdated, well women exam and 10 pound weight loss. If we do conceive Keflex daily to prevent bladder infections, weekly progesterone (17-OHP) injections at 16-36 weeks and vaginal ultrasounds to check cervical length 14-26 weeks. No genetic testing is recommended prenatally since all of Abe's medical problems are related to premature birth and not genetics. The goal of a second pregnancy would be to carry until at least 35 weeks gestation. Since I have PCOS and endometriosis I have absolutely no idea if I can get pregnant again. I got pregnant very quickly with Abraham but every pregnancy is different. Only God knows if we will have another baby at all and if we do if she or he will be healthy or have special needs. Prior to all of this we had planned not to use any sort of birth control but due to all the trauma of a 2 lbs baby hanging on for life and death we decided that it was the best option. Also that we would make an informed decision prior to thinking about having another baby. I came from a big family however I think one more kid would be a great fit for our family. We will be waiting some time so that I can lose some of the weight and pray some more about it.

33 months

Last week Abe turned 33 months which means in 3 month our baby will be 3 years old. I can't believe how far he has come. He is signing and saying more words every day. Currently he has an ear infection which has caused fevers, vomiting, decreased appetite. However NO inpatient stay however today is only day 2. He did eat a little and play plus army crawl around the house. I was so frustrated yesterday. I had no idea peds at Naval Hospital shut down the phones from 11-1pm. I can understand lunch time, ect. Maybe they had a meeting, not sure however the after hours advice line would not page the on call doctor. I was very concerned about Abe. He was mad the day before when I left to my post op appointment so he banged his head on our hard wood floor. Glenn did put him in his bed, which is padded to protect him because he kept banging even against Glenn. Poor guy probably had an ear ache and we had no idea. He played and ate well that day but not yesterday. He did not want to eat anything, took a few drinks of juice, kept falling asleep which is usual for him unless he has the flu or pneumonia and really was not himself at all. I immediately thought VP shunt problem. I made prefect sense to me as a nurse and mother of a kid with a VP shunt. After all he had banged his head on the hardwood floor when he was mad the day before. After numerous calls to peds at Naval I finally got in touch with someone. Neurosurgery from Children's called too. They thought maybe mild concussion and a respiratory virus. He does not have a runny or stuffing nose and only an occasional cough plus his oxygen level was 100% on room air. I just knew something was not right with him. Although I have not been cleared to lift him, not for a few more days, I loaded him up and headed to the freeway. I debated Children's or Naval ER then the RN at peds called me and booked an appointment for the next hour. Glenn met us there to lift Abe and the wheelchair. There was no way I was going to lift the wheelchair if technically I am not supposed to lift Abe yet. He perked up when we got there and it is an ear infection. That diagnoses never even crossed my mind since I knew he had hit his head plus was exposed to croup. Between 11 and 1 felt like forever for a return call or getting a hold of a live person. I exactly am going to inquire what the policy is for peds clinic. My post op appointment went well and everything is healing just fine. I still have stitches that will dissolve with time. On a side note a few weeks ago I was extremely sleep deprived, on medications, a week out of surgery so I probably was not thinking too clearly. Abe was not receiving a teacher for the vision impaired so I inquired and would not take NO for an answer. He several months without it despite it being in his IFSP. The school said they usually don't accept IFSP from parents (I hand delivered it in September). I don't know what the hold up, possibly contracts between Holly Ridge and the SKSD however my kid is going to get every service he requires bottom line. His doctor also put in for vision therapy with a local OD, which is different from what a teacher for the vision impaired would do. We have to make a decision between Madrona or EPO for continued developmental preschool. They seemed to think Madrona would be where he goes. I am not sure I want him there. Most of the kids are higher functioning and walking, 10 kids to 2 adults. Can they really make sure no one steps on or trips over Abe. Also will they have enough staff to help him into a chair, feed him or will he be ignored. I want to home school him but I think he needs the preschool for the interaction. He will receive ST, PT, OT and a teacher for the vision impaired. Aqua PT will require a referral from general peds. I want him to continue aqua therapy because he loves it and it helps with his constipation. He relaxes his muscles too. Well I plan to go to Mug N Muffin in the morning as long as Abe is healthy enough for dad to care for him.

Surgical update

The urinary catheter came out today which I am so grateful for. It was rather annoying. They fixed it so that I could actually hook it onto my leg right before I got it out. I am still recovering so I can't lift Abe yet. Thank you all for your prayers and support. The doctor said it is not cancer. My next post op appointment is next week. I will find out what the plan is then. I am hoping that this solved the bladder infection situation. I am still on antibiotics so the real test will be when they are gone. I am on them for 21 days total so I still have some days left. We had one of our previous neighbors interested in our Bremerton house however he found other place to move to. The cats are gone so now it is just a matter of getting the final stuff done then place on the market to sale. Our stress has decreased however we have been through a lot of changes since the end of June. Glenn came home after being gone 12 months, we moved, my surgery and getting rid of the cats. We have not been to church in a while so we are planning to return this week. Respite was able to care for Abe this week while Glenn was at work. She is not available on Friday so I will have to manage it myself. I am not supposed to lift Abe yet since there is potential for damage to internal structures. Abe has started signing "milk", "milk". Oh he is 3 months away from being 3 years old. I can't believe my baby is almost 3.

MRI/cat update

Glenn and Abe went to Seattle for the day. An animal shelter on the Seattle side accepted both cats. Cali may even have a new home. Angel on the other hand does not do well with change so she is on hold to be observed before being an "adoptable" cat. I honestly don't know if I ever want another animal ever again. It caused a lot of stress and strain and I don't want to go thru that again. I would love to get Abe a therapy dog, a chocolate lab actually, but not if we would ever need to get rid of him or her. I had no idea it would be that much trouble it would to find a new place for the cats. Before we ever get a dog for Abe I would definitely want to make sure that no one in the family is allergic. Glenn and Abe had a blast in Seattle even with an MRI and flu shot for Abe. The MRI showed no change in the subdural hematoma so he does not have to see neurosurgery for 1 year. This is awesome news. They went to Mcdonalds twice in one day too since traffic was horrible. My bleeding and pain has decreased since I have been resting and the fighting has lessen. Abe says "ball" now and is proud of himself. He carries a ball around the house saying "ball, ball, ball". So much for a kid that was supposed to be in a vegetative state if he survived. Thank you God for blessing our family with such a beautiful and smart boy.

Cats

We took the cats to the Kitsap Humane Society and they refused to take them. Apparently they really do REQUIRE an appointment if you are taking them in. This has caused a ton of stress on our family that I honestly can't say that by Christmas we still even be a family. We fought non stop all day. I had my surgery last week and it has not been very fun. I had tons of vomiting post op and now due to all the stress and not resting I have post op bleeding. I have talked to my doctor on the phone but have not been seen yet. I have not really explained to him just how much bleeding there is. I don't want to burden Glenn any more than I already have. If I had known how much of an inconvenience I was I would have never had the surgery. Glenn has had to do my job plus his and care for me too. This surgery has knocked me down more than the gallbladder surgery this past January. My mother is here but she is not familiar with my stove, oven, washer/dryer, where to put stuff ect. She has helped put away clothes with my assistance and feed Abraham or cuddle with him. The sample they took straight from my bladder showed no signs of infection therefore the pocket they removed was the source of the infection. It was sent off to be checked for cancer. I should know the results and get this urinary catheter out next week then I won't be a burden to anyone because I should be able to fully care for Abe. The MOPS ladies have been wonderful, they have brought us dinner which has been a huge blessing. I just ask that Glenn and I have prayer or our marriage won't make it to December. On a more positive note Abraham is doing beautifully in the new house. He is more mobile and able to communicate some of his needs. It also appears his vision has improved. However if there is stress in the home or ends up with parents that are no longer together this progress probably won' t be a strong. Glenn and Abe are on their way to take the cats to a shelter that will take them for a fee on our part. Then Abe has an MRI and neurosurgery. I just pray his VP shunt is working properly because I don't think our family could handle it if he needed a revision. Oh VP shunt revisions are very, very common and almost unheard of not to need them.

32 months

As most of you know another military family was selected for Extreme Home Make Over. We appreciate all the support we had with nomination letters, help with video and video editing. God did answer prays and open a new door for us. We purchased a brand new construction home that is the next best thing to EHMO. We even put in the offer prior to the steps being put in at the front door therefore the builder put in a cement wheelchair ramp that meets ADA code and a wood ramp in the garage. We absolutely love our new home. Abe has made tremendous progress as well. He sits up on knees now, crawls on all four extremities on occasion rather than army crawls. He also sits on his butt but with his knees curled back but he can stay like that for a long time. He signs "want", says "go, go" to Glenn when he sits in his Rifton high low chair. The inside joke to "go, go" is Glenn spins him around so Abe looks him straight in the eye and says "go, go" when he really should be eating. Also when respite had Abe the other night, he saw us leave and he said "go, go" and got very upset since he was staying home. For parents that have children birth to kindergarten check out "readyforkindergarten.org". They offer free parent classes on how to prepare your child for school plus a free notebook with information, tote bag and learning toys for your kid. Not cheesy toys either, nice toys. Not all school districts offer it but I would highly recommend it. I realized I was not counting with Abe enough or showing him colors, shapes, ect. Glenn posted the alphebet strip on the wall and I got a banner with colors at the dollar store, like what a teacher would post in the classroom that he put up in Abe's hallway and room. Yes Abe has his own room now, finally and we don't have to worry about where the sleep safe bed will go, his wheelchair or his Rifton high/low chair (like a high chair but for bigger kids). We are not completely out of the old house but are almost there. We plan to sell it but renting it out would work too since we currently have 2 houses to make payments on now. I have surgery in a week so I really want to be done with my all the cleaning of the old house. We have the main area near the front door left, back patio and front porch including the yard left. The cats are still looking for a new home too and will probably need to be out soon. I registered them with PAWS in July and no information yet. I am not sure how long this will take but we can't sell or rent it if they still live there. I spent some time cleaning the other night and Glenn walked thru with Abe in his arms. I have noticed Abe coughing lately so he might be allergic to cats or it may have been all the vacuuming and dusting or a combination of all of it. Please pray my surgery goes well, we sell our home and Cali and Angel (cats) find a loving home. They know something is up. They both followed me to the front door when I left tonight. That is all for now. I feel so blessed that Abe is doing so well. I think neurosurgery will be impressed. They see him this month and he has changed tremendously since they last saw him 1 year ago.

30 months old

Abe is really enjoying playing on play structures and being around other kids lately. He climbs up and down the little steps. he works very hard to do this but enjoys it. He does on occasion get very frusterated if he can't get to the next step. He likes going head first on slides and tries this on steps too. PT has been working with him to learn to climb up and down steps (not head first, lol). We are considering trying for another baby but just not there yet. Especially since I will probably be having surgery on the urethra in October. My mom will be coming to visit this Fall too. He saw GI this week at Children's and his weight is up to 23 lbs which places him in the 1 percentile but this is a 30 month so not the corrected age of 27 months. He was in the 5th percentile for height. He is just going to be a tall and skinny kid. GI did not feel that he urgently needed a G-tube right now and was happy with his weight gain. however his constipation needs to be better controlled. Some of the constipation is contributed to his CP which is a neurological condition and his diet favorite cheese and mac n cheese. We went swimming after his appointment at Children' s the other day and he kicked both legs and moved his arms in and out. He wore himself out. The inspection for the new house went well per Glenn's report. I was not able to be there due to Abe's appointments. The builder put in an ADA ramp. Although it's not EHMO we feel that God has provided for us a house that will better meet our needs. If everything continues to go smoothly we will be moving at the end of the month. However we will still need to fix up our current house and put on the market. Since will have 2 house payments to make. The rest of the hardwood flooring needs to be installed in our current home. Abe's stander with wheels is ready to be delivered however due to limited space we are postponing the delivery of this. The activity high/low chair and wheelchair are almost ready for delivering too. Abe is going to love the stander. I selected a light weight wheelchair since I don't want to be lifting a 60 pound chair in and out all of the time. I finally applied for Inspiration Through Art for Abe's photo session. The stories on the website will take your heart and then some. Kids are so amazing. We will be doing some things with Starlight Children's Foundation including Great Wolf Lodge. We have never been there before but we thought it would be a mini vacation and Abe loves the water. Abe and Glenn are sleeping. So good night for now.

Dare Devil Abe

Abe is progressing right along, still severely developmentally delayed but progressing. He will sign "more" and "please", sometimes without any prompting too. We are working on him feeding himself still. He still does not like crunchy textures. His sleep safe bed came and it is wonderful. Thanks to Tricare for covering the cost expect for the ECHO copay. He still wakes up at night but not as often and I don't have to worry about him banging his head on the sides since it padded. Glenn has been home for a few weeks now. He will be on shore duty finally, after 17 years of nothing but sea time. The last few weeks have been super busy for us. The only place we could put the bed is in the front room where he plays. So he has limited play room at home now. We never heard back from Extreme Home Make Over but they get 1, 000 applications daily.With Abe's other medical equipment, wheelchair, stander with wheels and a high/lo activity chair we put in an offer on home that is single story. It is still being built. The offer was accepted and they are even putting in an ADA ramp into the house. It is on 3.5 acres and won't be as noisy or busy as the current area we live in. Our current neighborhood has calmed down some since the neighbor's room mate left a few weeks ago. Abe has been so excited and determined to climb up the steps to get the slides at playgrounds. He will even initiate going down head first. He is still having constipation issues but his appetite comes and goes. He sees the nutritionist next week. He is going to speech therapy weekly which has helped him with communication. It is so neat to see his progress all by adding speech once a week. We are going to try to combine speech and pt on the same day since we are moving next month. We also have considered doing couponing and not have Internet on our phones. We will be super busy in the Fall with therapies almost daily. Plus I might need surgery on my urethra since there is an extra pocket that is contributing to my frequent bladder infections. I will be meeting with my Elizabeth project mentor which I am so excited to learn how to be more like Christ from her. She is a RN too but is working. I let my RN license expire. I also signed up for the Newlife special needs bible study. I just hope that I am not banned or blocked from the group like I was with Newlife mom's group. I really have no idea why I was blocked either. Oh well maybe I hurt someone's feelings or God forbid my kid is different than theirs. Yes Abe is different and may never do the things that other kids do but he is God's miracle and every day we are more and more proud of him. Please pray that I get over the hurt I am experiencing knowing that I was excluded from a group that my other friends are part of. That is it for now. I will try to continue updating this, especially after Abe gets his weight checked again. Please pray that will grow and not require a G tube.

G-tube

That's right there is talk of a G-tube(tube surgically implanted in the belly) if he does not gain weight this summer. Poor thing when he is sick he does not want to eat and loses weight and when he is constipated he does not want to eat and he vomits. The first year of his life he had horrible reflux and was admitted 5x for respiratory viruses. Also when it is super hot outside he tends to vomit and does not want to eat. Our house gets very hot even with fans and window ACs. Due to recent safety concerns in our neighborhood I have not felt safe to open windows especially at night. Abe's constipation seems to be under control with the use of prune juice and daily Miralax. Benefiber was suggested to me too however the bottle says not for use for kids under 6 years old.I am waiting to hear back from Children's GI doctor on this. The peds GI nurse said that she was not sure so she is checking with the doctor. His nutrition appointment at Madigan is at the end of July and August for GI. I wish he could see nutrition at Children's however it sounds like he has to see the one in the military system. It is so much easier to see one at children's when we have another appointment than go all the way to Madigan for one appointment. Abe has been enjoying swimming. I try to take him 1-2 week but some weeks we miss due appointments. His sleep safe bed is coming next week. Not sure where a 9 foot bed is going to go in our house but he needs it. That is it for now. I need to read to Abe for the summer reading program.

The Very Skinny Baby

I wish I could say the Very Hungry Catepiller but Abe has not been wanting to eat very much lately. He weighs a little over 22 lbs. So that means he has only gained 2 lbs since August 2010. However he did lose 2 lbs while at Phoenix Children's Hospital. he is not wasting away because he has muscle mass. I wonder if he has body structure that I had growing up but
Glenn's height. he is definately us kid, stuborn and all, lol. He has had bouts of constipation then diarrhea and has vomited a few times over the last few days. Our house has been very hot but he vomited a lot more on Wednesday when we were outside which was cooler than our house. The outside temperature was nice too so not sure what is going on with him. He also had blood in his stool. I have been giving him prune juice with water and it seemed to help. I really don't want him dependant on Mirlax so I am trying to increase fruits, veggies and prune juice. The ARNP at Children's is recommending an x-ray of his abdomen to rule out an obstruction. She asked me if I felt he neededs ER and I did feel he needed to be rushed to ER so he will see a doctor at Naval in the morning. She is familiar with him but has never seen him for an appointment. His pediatrician is retiring so we are working on outside one that accepts Tricare and feels comfortable with a kid so complex. There was a doctor recommended to us because she has NICU experience. She is not accepting any new patients, Tricare or other insurance since someone is having a baby. I added peanut butter back into his diet today and I did not see any problems with an allergic reaction. Before it may have just been because he was getting sick and got synagist too. He needs his hib vaccination too but this will further contribute to loss of appetite. If he does not gain weight there is talk of a g-tube. However we are not there yet but there is a potential. I am pushing cows milk with whipping cream added, cheddar cheese, butter,mayo, hummus with butter mixed in and cottage cheese however I bought the 2% cottage cheese and not the whole milk kind. You would think with all the McDonald's chicken sandwiches and cheeseburgers he eats he would be a fat kid. I know I have gained back the weight I lost when I had the gallbladder problem. I am also pushing protein like chicken and eggs too. I plan to make both of these and mix with mayo.

Too Naval Hospital or not to

Abe has had diarrhea on and off since Saturday evening, well subsided today. This week has been so stressful. he just wants me to hold him all night and day. I took him to Naval ER Tuesday since peds had no openings and urgent care felt he was too complex for them. His physical exam was great, alert, not fussy, stable vital signs and fever so we went home. At the EFM meeting he was so cranky but we stayed there any ways. he calmed down on the car ride. He saw a PNP at Naval on Wednesday, my birthday, and felt it was beyond her expertise so off to Seattle ER we went. They also felt his physical examination was great but wanted additional testing of his stool like for c-diff and rotovirus plus stool culture if not already ordered. We really miss Dr. Gist and with Dr. Wilde retiring this summer I think it is time to switch him to a pediatrician outside of the Naval Hospital. Yes it is convenient, has xray, pharmacy,lab ect however all this is usually repeated at Children's any ways so why put my kid thru extra painful medical interventions if Seattle Children's repeats it any ways; like chest x-ray, blood cultures, ect. I got concerned about his VP shunt since he went from extreme constipation to diarrhea. He has been a little more clingy and irritable but other times is laughing and giggling. He might be losing weight too. Tricare would need to approve him getting switched to a provider in town if we stay prime. I really feel he needs a consistent provider or group of providers that can handle the level of care he requires. I don't expect them to manage everything like VP shunt, chronic lung, hypothyrodism, potential seizures, CP,ect but feel comfortable caring for him and feel comfortable making primary care decisions with parent input and make referral and write prescriptions. I asked for a few things at primary care for Abe and provider refused and my requests were basic things: rectal Tylenol since he has been so irritable and I can't get oral Tylenol in and triple diaper mix since the diarrhea has made his bottom red. I did not think my requests were too much to ask however we saw a PNP and not Dr. Wilde. As a former FNP student I always thought NPs were more likely to listen and order what the patients need unless it is an usual request but not in this case. We made a long trip to Seattle Wednesday, no hospital admission which I am thankful for. I guess it was better to have him checked out my experts that be at home not knowing what is causing his diarrhea. If he was a healthy 2 year old I probably would have not brought in to ER 2x this week but he is not a typical 2 year old and I would hate to miss something urgent. If this post does not make sense he has been waking up a lot more than usual and just wants me to hold him most of the day and night. I don't know how many times this past week I have woke up holding him. I only have a few respite hours left for this month. When he is 100% better I will be taking him back to the pool however him drinking the pool water or eating the dirt on the beach may have caused his problem. Yes I let him lick a toy that had been in the dirt on the beach. Who knows what all was in the water. We were searching for sea creatures. He enjoyed touching the sea weed but not the crabs. Once I mentioned "do they bite" he did not want to touch them. I think he touched the sea weed because I did. I was scared to touch the crabs. he won't go to sleep and after midnight. Still waiting for speech therapy referral too. I spoke with Children's over month ago about it and they want him to have weekly speech therapy. Oh well guess it will have to be added to IFSP after the fact since the meeting is next week and I doubt we will have the referral in place. It is hard work being a mom but throw in special needs and the job description increases.

Video script

this is a rough draft of what I might include in the video.We still need someone to help us do the video since it requires the people to be in the video and Glenn is out to sea. Deadline is May 30 so we would need to get it done this week.
Video part:

Introduction: Hi ABC we are the Goddard family. I am Karen I am 37 (well almost, a few more days until I am), this is Abraham he is 2 years old and Glenn also 37. Glenn is currently deployed with the United States Navy on with (name of boat) I left this out on the blog for safety reasons.

Two years ago Glenn and I moved back to our home in (city, state, again left out for safety reasons on blog). I was six months pregnant at this time. We had no idea that I would go into full blown labor at 26 weeks gestation and have to be faced with decisions to about continuing life support for our son Abraham. Abraham was flown to a hospital with the neonatal intensive care unit. His breathing tube dislodged so he was oxygen deprived which caused brain bleeds and later the development of hydrocephalus and cerebral palsy. He has had several surgeries and hospital admissions.

My family is unique because are a family that has faced life and death situations with our son from the first day of his life. In addition we are a military family which means my husband has been away from our home for fifteen months. This has left me here alone in Washington to care for our special needs son, getting him to and from his appointments and therapies, manage our home and the difficulties it has while Glenn is away serving our country for the Navy.


When Abraham came home from the NICU Glenn did some volunteer work with the State Liquor patrol to monitor for people that are driving under the influence. I help women learn to care for their skin and make up application tips at no cost with Mary Kay Cosmetics.

My family has over came adversity by making our home


Our life would improve if our house is made over because I would no longer have to worry about how a wheelchair and other medical equipment will fit in our home. In addition it would give Abe the freedom and space he needs to explore his environment so he can develop.