Monday, December 17, 2012

1st ultrasound

I had an appointment with the nurse a few weeks ago to establish care. Since I am considered a high risk pregnancy I am being followed by complicated OB so centering care (group education appointments where they call each women out individually for weighing, ect) is out of the question for me. In addition I will be followed by a doctor rather than a nurse midwife. I know some moms are in a situation have care by a midwife, very little medical intervention and do home births. I admire that, my own mother was born at home but given my prior 26 week gestation delivery this is not an option for me. In fact I would rather deliver at a hospital that is equipped to deal with newborns that require high acuity care than deliver at home without the trained medical professionals. I was told that any pregnant women high risk or not should not lift anything over 25 lbs. My doctor today said that in some countries pregnant women carry their other children in baby carriers while working and there has been no link between carrying another kid while pregnant and premature labor or delivery. He did however say to not over exert myself. This is the same doctor that delivered Abe so he knew some of medical conditions and inquired if he will ever walk. Abe sure has came a long way. Based on the ultrasound today I am only 7 weeks 6 days instead of 8 weeks 4 days but my due date is still July 25th. I did not hear the heart beat but the doctor said he saw it and confirmed there is definitely a baby in there and only one so no twins. We decided that we will do the full work up for birth defects, well the extra ultrasounds and blood tests not the amniocentesis since the risk of labor and infection are high. I know that we may get a false positive since I am 38 and I will worry myself to death. With Abe we never bothered with this however given our prior history of having a medically fragile 2 lb baby but we want to know so that proper referrals to professionals and/or if a hospital set up with a high acuity NICU will be required. This additional ultrasound and blood work is only offered at Madigan. Childbirth and pregnancy are a natural part of life and have been for thousands of years however it has not always been an easy task or normal thing for every single mother out there. I mentioned the nausea and vomiting and my doctor did not recommend ginger chews so he prescribed vitamin B6 and Zofran. I will require more frequent appointments than the average course of pregnancy. Starting at week 16-36 I will require progesterone shots to prevent premature labor and delivery. I know at least one of my friends that had progesterone shots and she delivered a healthy baby girl that was full term, her first full term baby too,all her other 4 kids were premature but healthy kids. She was not happy with the weight gain but is thankful for no NICU stay or having to take a 2 month old back to the hospital for inpatient care. There are no guarantees this baby will be stay inside the womb until full term. There is a huge difference in development between a 34 weeker and a 26 weeker. The progesterone shots require weekly visits but with the nurse only. I asked if there is potential for bed rest and this would only happen if I had contractions or signs of premature labor. Sure hope we have a girl growing because Abe already calls her by her nick name but if we have a boy that is wonderful too. We would need to reteach a name to him. He gives the baby high fives and kisses. It is so cute. He will make a great big brother to either a sister or a brother.

Tuesday, November 20, 2012

July 2013

July 2013,some might think well what does that mean especially if you are not a Facebook friend or you don't have a FB account. Abraham will have a sibling July 2013 or even where she or he wants to come into the world. I am really hoping to make it 2 weeks before due date or after. I debated sharing the news so early, I am only 4 weeks 5 days along. I kept waking up for the last few days thinking I need to share the news so more people know to pray. The feeling to share the news just would not go away. For those that know me well I am not a morning person at all however I am waking up super early just full of energy and I just started the vitamin D supplement today. I occasionally take it if I remember however it is important to take daily because Vitamin D has been associated with less pregnancy complications including gestational diabetes, premature labor, preeclampsia. Here is the article My doctor did not prescribe 4000 IU, only 1,000 IU.   I did not even hear about taking extra vitamin D with my prior pregnancy but I lived in sunny San Diego too. I know to limit or avoid caffeine because it can decrease blood flow to the uterus however I know some moms that had caffeine daily and still had very large babies, 10 lbs of pure newborn. I also know that ingesting high levels of vitamin A can cause birth defects. Green tea interferes with folic acid absorption. I can spend countless hours in worry about oh no I had a lot of caffeine (soda and chocolate) the last 2 weeks, I had green and Chamomile tea, I took Abe's vitamins instead of my prenatal because they taste good. Interesting the days I ate a lot of chocolate covered almonds and drank the chamomile tea were the days I had the most nausea.  The alternative to this would be to I live life, continue to celebrate our miracle baby's (Abe) accomplishments (he is doing amazing), enjoy what will probably be my last pregnancy since I am 38, get my house organized for a new baby and know that God's plan is his plan and I can't change what he already has in store for my family. Abe visited a family with a  2 boys a 3 year and a 7 month old and Glenn saw that Abe was very nice to the 7 month old. I have witness this as well. He even raises the tone of his voice when he talks to him just like an older child or an adult would. Please pray for us because if you knew me right after Abe was born I said I wanted more kids but I would NEVER get pregnant ever again because I did not want to put myself in a position to see a tiny newborn face life and death. I found some peace in knowing a few moms that have a special needs kid and they all had healthy, typical kids for their next kid. I love Abe with all my heart and I am so thankful he is still here and learning, growing and exceeding any exceptions that were placed upon him when he was just 9 days old. Please continue to pray for a healthy, uneventful, boring, normal, typical full term pregnancy. When I hear moms say how uncomfortable they are when 9 months pregnant I have no clue what that feels like but am desperately wanting to experience it too.

Monday, November 5, 2012

Take a stand

Abraham is growing and changing so much. He is definitely not the little 2 lb fragile baby we could barely touch during NICU life. He is talking, eating, and drinking more than ever. He also has been pulling himself to a standing position a lot. He even tries to climb into the bath tub without assistance. This boy wants to walk however in order to be able to walk he needs a gait trainer or a walker to help him. He gets frustrated in his stander because his feet are strapped down. The stander can move but my wheelchair wheels only. He is in an upright position like his peers. A few weeks a go at church some little girls were running around next to him. He did a push up and tried very hard to get up and quickly went back to the floor and verbalized "no walk". I broke down in tears because it broke my heart that he desperately wants to walk but can not due to the brain injury.  He has the determination he just needs to the practice and tools so he is successful. He is currently on a Bacloefen 10mg. I really did not want him on medication but his muscles are tight without it despite PT, pool therapy and stretching. He saw orthopedic surgery last week and his hip x-rays are abnormal but not so bad that he needs to be rushed into surgery. He will be fitted for new AFOs in a few weeks. MRI for VP shunt showed no concerns and neurosurgery does not need to see him again for one year. Abe was tested and diagnosed with autism spectrum disorder. (ASD).  I always thought no that is one diagnosis he does not have but after talking to the doctor and seeing the characteristics it is disheartening. We had him tested because I get asked a lot in the community and by other parents with special needs kids if he has ASD. This qualifies him for 5 days a week of ABA therapy. We are hopeful that ABA therapy will assist with the head banging, spiting and throwing and obsessions with  objects. He gets obsessed with rocks, cars, paper towel rolls, balls and pencils. He tries to carry as many as he can in his hands. Abe had an Inspiration Through Art photo session with Julie Ross with Abundant Life Photography.  The pictures are amazing. I will post the link to share. The password to look at the pictures is "hero"For now I need to finish my ballot since it is due tomorrow.

Tuesday, October 2, 2012

Fall Changes 2012

Wow I had no idea it would be difficult to log onto my own blog but I finally figured it out. Fall causes many changes: outside temperature is cooler, colors of the leaves, the air, the produce you can find in the grocery store and activities. We have some changes in our lives. We have decided to try for another baby. Abe loves kids and we had always planned to have more than one. However given the circumstances at Abe's birth we took every precaution to never get pregnant ever again. We are both 38 so we decided if it going to happen at all it would be better prior to the age of 40. I stopped taking the daily antibiotic that urology put me on just so I am not on any medications expect prenatal vitamins, vitamin D3 and cranactin if I have bladder infection issues. Not sure when or if it will happen but I have also decreased the amount of Coke and Dr. Pepper I drink. I have not completely eliminated it but I do have days without it at all. Abe is currently sick but is still eating and drinking so he probably won't require an inpatient stay. He had had his Inspiration Through Art Photo session and we have a picture of him on his tricycle with a red cape. Thank you Julie Ross for doing this for our family. When I see that picture I think about how much inspiration Abe has been for all of us. He was fighting for his life right from the beginning but now throws "normal" 2 year old temper tantrums. He is speaking more, learning to potty train, riding his tricycle and pulling himself to a stand. He started AWANA cubbies this year. His favorite part is the play time with the other kids.  Professionals involved in his life see a very determined little boy that does not let any thing stop him. His favorite food right now is tortillas with cheese with ground beef or chicken. He calls them "hot tias" He is out growing his clothes including his PJs. He will ask for a clean diaper. All he is doing just blows me away. I remember looking at the brain scans, hearing what the neurologist told us, seeing him hooked up to 16 plus IVs I thought for sure he would not be aware of world. I was wrong and so was that doctor. I am so thankful that I did not pull life support because so many times I felt it was the right thing to do based on my medical knowledge and seeing what this tiny 2lbs child went thru. If we do conceive again we will need a lot of prayer. I really don't want to see a NICU ever again expect from the outside to say hello to the staff. I will continue to update monthly or other month.

Wednesday, August 29, 2012

The B-I-B-L-E and Freedom

Abe continues to amazes us daily. Over the last month he has said and done wonderful things. He played with a toy he received from the Ready for Kindergarten program with focus and used his fine motor skills to put the blocks correctly on the appropriate color plus he identified the shape of each piece. I was impressed because he usually just throws it. ABA therapy had helped him a lot with his behavioral issues one of which is throwing toys and banging his head. I am sadden to say that Tricare will no longer pay for ABA therapy under the ECHO program unless the child has an autism diagnosis. We have seen real progress and have learned from our ABA therapist beneficial educational and behavioral skills that we have not learned from OT, PT, ST, teacher for the vision impaired, special ed teacher or any other provider that has worked with Abe. I will be inquiring how to fight this because why would a medically complex, brain injury children not need ABA therapy? I also plan to get him tested for autism because I have had multiple people ask me if he has autism. I know adult stroke victims sometimes have personality changes after they suffer a stroke, some become violent due to expressive communication difficulties. I can imagine that behavioral training can assist with this even for an adult. However a child's brain is still developing and changing so why did a Federal judge in California make a decision to take this service away from special need children of active duty military? I guess my husband and all other active duty members risking their life so we all have daily freedom is just not enough for our special needs children to get to the therapies he needs in order to maximum their potential.  What is the incentive for people even to join the military then? I also know some retired military that gave 20 years of their and now are struggling to find jobs, pay for their homes and food. Some are losing their homes. This also makes me sad since those people risked their lives, worked weekends, holidays, shifts that last more 24 hours, ect and now they can't provide for their families. There is a country song that talks about the sacrifices our military makes for our freedom. When I first started writing this it was about the Bible and Abe's accomplishments.One last fact about the prior topic if it was not for our military fighting for American years ago we would not currently have the freedom to read the Bible. Last night while I was doing the dishes he said "Bible", "read Bible" while opening the little Bible the Gideon Foundation gave him at the county fair. After I finished the dishes I picked him up to carry him to his room for a diaper change, he still had the Bible in his hands. While changing his diaper he said "Bible, book of Jesus" without any prompting. Another amazing thing he is doing, he pulls himself to a standing position on occasion. Tonight he went to the refrigerator and pulled himself up a standing position while asking for "mac cheese and chocolate milk". We gave him some chocolate milk to fatten him up so now he thinks all cow's milk is chocolate milk. He is determined to stand and walk but much like a stroke victim he has right sided weakness and balance issues. I wonder if there is any medical treatment that re-trains damaged areas of the brain to take over these functions. At an appointment with his new pediatrician he had gained 3 lbs according to the scale. He did not fuss so much when the core men did this vital signs. He is growing up so quickly. It is difficult to imagine what life would be like if I did have life support stopped in the NICU. He has far exceeded the expectations that we were told when he was only 9 days old. I honestly thought he would be unaware of his surroundings and have a different quality of life. His quality of life is different than typical 3 year old boys but he still likes to explore by crawling instead of walking, play with cars, get dirty, wiping his dirty hands on his pants and he tries to jump off the side of our coach. Abe also has started to pretend play. Currently he has a bowl from the NICU, (one we put his first bath water in, yes it has been cleaned), he is "making, cooking" "mac cheese". I will continue to post at least monthly. Our September is pretty busy, some appointments in Seattle, base ball game, Great Wolf Lodge, zoo plus Abe starts school. So glad some of the calender is not all appointments or therapies but some fun stuff too.

Sunday, July 29, 2012

Mr. Strong Will

We knew that Abe had a strong will because he beat the odds from his first day of life. I remember Dr. Long at Madigan calling me and asking if CPR should be continued because and she teared up as she said "he is fighting very hard to not be with us". We said continued and sure enough "Mr. Strong Will" was still fighting to be here on earth when we arrived. We also remember neurology informing us when Abraham was 9 days old that he would be in a vegetative state if he survived at all. We thought about pulling life support so he would have a good quality of life. Well he beat that odd as well. One of the first signs of his strong will was pointed out to me by Sherry Copper, a pastor's wife, that was also staying at the Fisher House. She noticed he was using his other hand to remove the sock so he could pull out his NG tube. That strong will has progressed to him verbalizing "cookie" when we leave PT, OT or ST, since daddy introduced him to the idea that Central Market gives free cookies to kids. Just this past week when we arrived there for his cookie and a few other items he said "no chair" referring to his wheelchair that I had already unpacked, so I offered him to go in a shopping cart. He said "no chair" and "no cart". It became a power struggle so put him back in his car seat and said "fine we are leaving". However I needed something from Central Market so I asked again "chair or cart" He continued to say "no chair" "no cart". I finally decided that I would carry him to the outdoor dinning area while pushing his wheelchair so we could have the discussion in a safer place than the parking lot. I was persistent and firm but gentle and nice. I told him your only 2 options are "chair or cart" what do you want. He finally calmed down and let me put him in the wheelchair and since he decided to behave once inside he got his free cookie. Some days I am not sure how to handle a strong willed kid. I will need to ask my mother if I was a strong willed kid myself. I think I was. I remember kicking walls, crying and screaming as a toddler and preschooler. Guess it is pay back time. I have a book reserved at the library, "Bringing up Boys" that another mom suggested to me. Any advice for dealing with a strong willed developmentally delayed boy?  Some mornings if he is awake before I shower I tell him I am going to take a shower and he says "no shower, no shower, no shower ...". Then he bangs his head on the bathroom floor or shuts my bedroom door and bangs his head there. Abraham's strong will is both a blessing and difficult. He would not be sitting next to me right now and doing amazing if he did not have a strong will. Not sure how potty training will go. He has the added difficult of not being able to stand or walk. His potty seat should be in soon. We requested a different one since the one we went to pick up was scratched up. I will attempt to update this at least monthly or when ever he has has another amazing mile stone

Wednesday, June 6, 2012


Abe will be getting his first bike in the morning,an early Christmas gift. An OT has modified a regular tricycle so he can sit on it and his feet will be fastening to the pedals. We are so excited and he will ask for it every day. At school he asks to ride the bike there. We already have a helmet for him. He has enjoyed riding in a toddler seat attached to Glenn's bike, however I bet he will enjoy riding his own.  Hopefully summer will actually happen in Washington. It still gets in the 30's at night here. His last day of school was today until September. He has enjoyed riding the bus to school and gets excited when he hears and sees the bus come and pick him up. We might continue the bus however I still have reservations about how loose the car seats are attached to the seat. I was taught the seat should barely move at all. These ones move a lot and through out the day multiple kids get in and out of them. He will have PT and OT for a few weeks at school during the summer however his teacher felt that he did not need the classroom instruction. She anticipates him to continue to progress even without school for the next several months. He will be starting ABA therapy with a new provider and company. We just had too many scheduling difficulties with the other company plus I sent several emails and left voice mails and no response back other than "I am rearranging my schedule". I don't have time to send multiple emails and make phone calls just to schedule an appointment. I wasted so much time with this. Hoping for a fresh start and for behavior changes with the new ABA therapist. If you don't know what ABA is just Google it. It is typically used for children with autism however kids with other developmental delays and or brain injury have benefited from it. I plan to have Abe tested for autism since people always ask me if he is autistic. He sees neurodevelopment next week. I am currently sick with a cold but Abe is fine so far. Just hoping not to get whooping cough since Washington has the highest incidence in the nation. Abe, Glenn and I have all been immunized for pertussis, AKA whooping cough, so hopefully we won't get it. Abe is older and stronger now too so an insult like pertussis won't knock him down as hard although it is fatal especially for the very young. Abe has increased his vocabulary big time, he even says "bless you" when someone sneezes, he asks to pray and says amen.  He must listen to our prayers because when we asked him to pray he said "house go, go, go". I interpreter this as "house sell". Our Bremerton house is still on the market for sell. Thankfully we are still active duty or not sure how we could pay 2 house payments every month plus utilities. In addition he will ask for "help" occasionally rather than cry. This past weekend I tried to rest since I am sick and he would go to the door and ask daddy to help him open it so he could get to me. I guess he wanted to comfort me. Over Memorial Day weekend we went to the Island Lake military appreciate day and Abe actually enjoyed the bounce house (with me in there with him). He used to be terrified of them. We are looking forward to many summer activities including a visit from his aunt, uncle and cousin next week. I will continue to update as he grows and makes progress.

Saturday, May 5, 2012

Due date May 5th

 Today is the 3rd anniversary of my official due date for Abe.  I am sure most moms forget what their "due dates" were but rather when they went into labor and the whole birth process and how much their child has grown. I think the date May 5th stands out to me for several reasons. The first one is his birthday is in February and not May since he was born at 26 weeks gestation. I craved Mexican food a lot while pregnant with him which is significant for a due date of May 5th since it is also Cinco de Mayo. Three years ago prior to Abe's extremely premature birth I thought wow May would be spent celebrating Nurse's Day, Mother's Day, my birthday and Abe's birthday however one of those birthdays is celebrated 3 and 1/2 months prior. I listened to a friend speak today at my church about special needs children in foreign countries that are placed in orphanages and not given early interventions.  It broke my heart my also made me realize that God knew what he was doing when he picked Glenn and I to parent Abe. I thought to myself wow 3 years ago, May 21 or 22 we brought home an 8 lbs, he gained 6 lbs while in NICU, medically fragile baby who was on NG tube feedings, oxygen, monitor who was supposed to be in a vegetative state is sitting in a chair that an OT modified while eating crunchy veggie sticks. He would not be where he is without all the interventions and love that he receives. He recently can say 3 words together while motioning, "momma", "sit". He also will ask for "cake", "cake", even for breakfast. He crawled all the way down our street and wanted to keep going but I stopped him since the end of the road is a busy road. He was super mad because he knew exactly what he wanted to do. We are working on a picture exchange book with real pictures since kids with CVI see them better than drawings.  He has been enjoying taking bubble baths and can even sit in the tub on his rear end with leg extended out without much assistance while he plays with bath tub toys we got a the Ready for Kindergarten program. He knows a cow says "moo, moo" now. I recently went to the Infant and Early Childhood Conference in Tacoma with a parent scholarship. I was able to attend for 3 days thanks to the respite we receive and that Glenn is on shore duty. I discovered that I need to do more normal learning stuff with Abe like teaching him how to make play dough and let him actually feel and stir it and other life skills like washing his face. The idea of rain pants so he can participate during recess time was brought up as well. Some days the play ground is too wet and cold for him to get down on the ground and play with the other kids. I am trying to find some inexpensive rain pants for him. We are working with ABA for his head banging and throwing behaviors. We are so impressed with Abe's progress. and we pray that he will continue to grow and be more verbal so the head banging behaviors will decrease. Oh another note my kidney stone is gone and next week I will discuss with my doctor all my lab results and hopefully figure out why I form them. It is so nice to not have to deal with the pain and urinary troubles the stone gave me. I am still on daily antibiotics though. Our Bremerton house is still on the market. We are praying it sells quickly. I will try to up date this blog monthly but some months we are just super busy.

Tuesday, April 24, 2012

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. 

Friday, March 9, 2012

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.

Monday, February 6, 2012

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.

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.