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.

Proudest acheivement for home make over application

Prior to Abraham's extremely premature birth, I would have described earning my Masters in Nursing and Glenn's advancement to Chief in the United States Navy as the two things we are most proud of. Now achievements are measured in milestones and periods of no inpatient hospital stays. These milestones including: living through the airlift to Madigan neonatal intensive care unit (NICU), enduring hours of CPR on arrival there, coming home for the first time after one hundred and seven days in the hospital. Abe over came a lot before he even left the hospital but he still had much to learn. He learned to breastfeed after months of tube feeding, lift his head, roll and now army crawls. Abe is also learning to communicate through simple signs and words. These moments fill our hearts with joy and pride that our miracle son survived. We are also proud that we stayed strong as a couple during the roller coaster of emotions and medical status changes that are part of NICU life. Our desire to work together as a couple to provide the best life for our son is our proudest achievement. In order to provide for our family Glenn has spent fifteen months away from our family serving our country in the United States Navy. I have been here to manage the house, the numerous medical appointments and therapies, the pets, and the upkeep of the house. Our proudest achievement simply stated is making our world a place where our son can grow and thrive.

MRI results

I called last week to get my results. I actually spoke directly to the urologist. The MRI did not show cancer but I do have a dilation of the urethra which might require surgical intervention if bladder infections are too problematic. The dilation can cause urine and bacteria to collect there and cause an infection that does not always show up on UA or cultures. Hopefully if I have symptoms I will be taken care even with negative UAs and cultures. I prefer to not take antibiotics all the time but I really don't like bladder infection symptoms. It is especially difficult when you have a small kid that does not walk. I have been better at drinking water and not holding it even if that means I have to unload a stroller on the ferry and go upstairs. I am so happy no cancer. I worried so much about how would Glenn care for Abe alone if it were a fast acting cancer but I don't have that stress now. I will know further details if I truly have a heart shaped uterus at my appointment in June. If I don't have a heart shaped uterus then I am not sure why I delivered Abe at 26 weeks gestation. I took him swimming today and he loved it. Believe it or not it is 9pm and he is fast asleep in his crib. I think the days he does not nap he actually sleeps better at night than the days he does nap. There is no hard and fast rule that every 2 year must nap at the exact same time for the exact same number of hours. Every kid and situation is different. I bet he is so tired from swimming. Too bad I can't take him every single day but he already has a lot going on. Still waiting on speech therapy referral since Neurodevelopmental ARNP wants weekly instead of monthly.

Nominate information

For blog readers that don't follow us on Face Book. If you want to nominate my family for Extreme Home Make over please see the following:

The producers of ABC's "Extreme Makeover: Home Edition" are seeking people involved in the military whose home deserves an extreme makeover. Interested military families or people who wish to nominate a military family should e-mail a short description of the family's story to emheusa@gmail.com. The e-mail should include the names and ages of household members, a description of the family's challenges, an explanation of why the family is deserving of a makeover or is a positive role model in the community, photos of the family and their home, and contact numbers. The deadline for nominations is May 30, but people should send submissions early. For more information on the application process, visit the ABC website.

Baby gates

Wow Abe made it through the baby gate, down the drop off and made it all the way to the stairs. I caught him there playing with a piece of paper that he had just threw to the first step. He seemed so happy until I picked him up and moved him back to a safe place. This past week was difficult for us. The neighbor kept having parties that started at 2am, I had my MRI and I just wanted/needed sleep. She said sorry today and really seemed sincere. I had been praying for her thanks for advice from other people. So glad the MRI is over however I called to make an appointment for results and I was told June. Really 2 months to get results of something complex like an MRI. I did not get one just because. The doctor ordered it to further investigate why I have blood in my urine and protein and dilation of the urethra. I think they also looked at the shape of the uterus. This will determine if it is truly heart shaped. I think I want at least one more kid but am scared. Plus I see many moms with multiple kids and it appears to be more difficult than having one special needs kid. Abe got to ride a horse today with assistance and loved it. Also I helped him down the slide and he also enjoyed that. I am working on getting more speech therapy. Currently he gets 30 mins once a month and the neurodevelopmental ARNP wants weekly. I know a new speech therapist in the area that accepts Tricare. Now it is just a matter of getting the authorization changed to a private provider and out of Holly Ridge. Abe and I will be going to the zoo to celebrate Mother's Day and we are also doing the Duck Tour thanks to Starlight Foundation. The count down begins till Glenn comes home. It breaks my heart to hear Abe ask for "da, da, da, da" every time the phone rings. He thinks the other person is always da,da. We had a busy, busy week. He is sleeping and so should I.

Follow Me

On May 2nd Abe will be 27 months old. He has been asking for da, da all day today. He is starting to follow me if I go into the kitchen, if I take out the trash or if I get up from the bed. It is so cute that he follows me but also means more childproofing. We recently got a hand me down crib from one of his pals. He will sleep in for a few hours at time but then wakes up crying and banging his head. I just got a bumper pad last night and tonight will be our first time with that is place. My friend picked it for us at IKEA and she choose the colorful one. I hope this will provide visional simulation that is comforting. Some have expressed that the head banging is a behavioral thing, AKA temper tantrum. His PT who has worked with many kids with brain injury for many years said the head banging is for simulation. It is not fully understood but is very common with brain injury people. I also think it due to Abe's lack of communication. He is getting speech therapy 30 minutes once monthly. The neurodevelopmental ARNP at Childen's Hospital wants him to receive weekly speech therapy while his brain is still young and forming. I called PCM 2x this week and am waiting for a response back. Boy do we miss Dr. Gist but we understand her need to be home with her boys. I don't think the ARNP can put in the request for the referral to Tricare, it has to come from PCM. I know this add one more thing into our schedule however my family, especially Abe, take 1# priority, after God of course. He started the twice weekly developmental preschool class but so far I have not been able to leave since the staff is getting to him and his needs plus he gets over stimulated on occasion. The first day we had to leave the room and come back 30 minutes later. I recently purchased Abe a cheap plastic chair from Toys R Us and I allowed him to gently move out of it onto the floor. OT recommended this. I know a 5 year boy that is not able to walk that is able to do this. My hope is that Abe too will follow in his buddy Xander's footsteps. Recently I met a lady at Micheal's who has an amazing former preemie that is able to walk. He also has CP. I am looking forward to getting to know her better. We have had some changes in our respite providers due to family circumstances. We just hired 2 new providers. We have used one of the new providers already and she is so interactive with Abe and gets a kick out of his giggle. Abe and I went to a Mairner's Game thanks to Starlight Foundation. It was so sweet, Abe got a bag of gifts when we picked up the tickets. A wooden clock toy to teach time with moveable parts and blocks, board books, a ball and a scarf (probably for the momma). He also received his braille books from Seedling Braille Books. So cool they have bight pictures plus touchy freely stuff plus braille. If resources allow visionally impaired kids get 2 free books each year. On a more serious note my doctor has ordered a pelvic MRI to figure out why I have chronic blood and protein in my urine. I do have a kidney stone that is small enough to pass but the doc said it won't be without pain. (I have had one before and honestly gallbladder attack symptoms and pain is much, much worse). I also have a dilation of a gland in my urethra. I was put on daily oral antibiotic for 1 month. I was also advised to drink lemon in my water since this helps with kidney stones. The urologist was pretty neutral on advising on cranberry juice CranActin, or daily vitamin C. I am pretty nervous about MRI. I just want to be healthy. I just think my bladder infection in January was not treated properly and now I have chronic inflammation that the scope revealed this month. I ask for prayer that nothing major is found and for continued growth and development in Abe. I should proof this but I am too tired and we have a lot of Easter events this weekend. Thank you friends for inviting us. Christmas was a rough time for us. We felt very left out in social events but it was during cold and flu season so that might have been why. Very hard not to take it personally though.

Celebration or disappointment

A few weeks ago Abe and I went to the women's retreat. Abe had respite for most of the speaker time and had a blast playing in the hotel room with her and his discovery toys stacking cubes. The speaker discussed that she was unable to have biological children despite that God gave her a Mother's heart. It was very difficult for her to see so many friends and family members having children. She is in her 50's now so is past child bearing age. However rather than living life "being disappointed" bitter and angry of her childless life she chose to be a spiritual mother to children who did not have role models in their homes. She did admit to grieving what she longed for so much. Abe is sick right now,not really wanting to breastfeed or eat but still playful, happy, maintaining urine output and oxygen levels. Thankfully he is not in the hospital. They think it may be a peanut butter allergy and a cold. So today we went to buy some chicken soup since he loves chicken soup. Oh our drive home I found myself disappointed that he does not sit up,walk or run like the other 2 years around us. I found myself grieving a "normal child", "healthy child" Just yesterday he crawled to me when I told him to come to me because it was time for his bath. I was so delighted and proud of him because his vision teacher has been working with us for him to crawl to me when I need to pick him up, change his diaper, put on his shoes,ect. What is interesting is I did not have a toy to entice him to come. I just told him a few times and put my arms out. He is saying more words to, "yeah", "na" "more". Some times he says the words at appropriate times even. For example, when asked "do you want more food" he says "more" or "is that "yummy" "yeah". He continues to wave hi and bye, blows kisses and makes a "f" sound that he learned when I blow on his food. Sometimes he does this with cold foods as well so he needs to learn the difference between hot and cold especially with the vision impairment. His thyroid level, free T4 was elevated but this was done at Naval and I don't know if there reference range is pediatric specific or not. this week we received our 2 year LLL spoon. It is a tradition for every year you nurse you get a spoon. The first one was "external devotion", I can't remember the 2nd one but I think it something about "strength" I will need to find out and post later. He attempts to sit up now. He is no longer safe on our bed without direct supervision because the little stinker figured out how to get between the side rail and bed and lean over the top of the rails. Abe tries to crawl after the cats now too. A few weeks ago I was in the kitchen doing dishes, yes Glenn, I do clean occasionally, and Abe crawled to the wall by the kitchen and peeked over and smiled at me. It was so incredibly cute. He continues to amaze us all but I find go back and forth in the stages of grief. I am trying to do everything I can to maximize his potential. Starting next month he will be attending class at Holly Ridge without my assistance. This is a huge step for us. I am planning to home school. I hope I will continue to receive the PT, OT, ST, vision teacher and school district support if I do home school down the road for kindergarten. That's all for now since he is sick and I think I am coming down with it as well.

Decisions, decisions

Glenn is up for new orders soon. We need pray in order to make the best decisions for our family. It has been tougher than I expected having him gone this long. I have noticed several postings on face book about other military wives doing all these projects while their husbands are gone. I guess mine should be to finally unpack our house. Abe is still sick but his oxygen level was 98% on room air and heart rate was normal. I have not even taken him to the pediatrician this time. He did however see the ARNP at Children's and his ears were red but he was screaming. Any kid's ears would be red if they were screaming. If it seems he is not getting better or getting worse I will have him checked out. I forgot to mention that he was accepted into the Starlight Children's Foundation. They provide tickets to social events. We have not been able to attend any of the events yet but am looking forward to it. This would be a great way to escape the reality we face daily and connect with other special needs families and kids. This week at Naval Hospital I was there for a long time waiting to talk to a nurse about UTI symptoms. It was rather annoying to have to wait but I saw a family with a special needs kid that knew nothing about the Military Special Families Support Group. I was able to provide them information about it. What is interesting is there kid is almost 11 and they have lived in the area for 10 years now. I hope they join the group because this group of people have been awesome at advocating for our family. Also this month I want to do more with Mary Kay since it is uplifting and positive.

25 Months

Abe is 25 months old today. I had an appointment at Madigan today and it brought back memories of the unknown that we faced daily "Would he still be alive when we returned in the morning" Also "should I keep pumping breast milk for a baby that never will be able to even drink it". I remember one night Chris and Glenn drove back to Bremerton and I had Leanna drive me from the Fisher House back to the NICU in the middle of the night just so I could check on Abe. Calling the nurses just was not enough. I wanted to see my baby and see what medically was going with him. It's been a tough week, situation at my church that made me feel un-welcomed and a secretary at Madigan telling me that since I did not have anyone to watch Abe I would need to come back. Just so you know Madigan is a little over an hour away and gas is $3.47 a gallon and that is Costco gas so probably the best price. There was no way I was coming back. On that note the Madigan appointment was a preconception counseling appointment to determine if there is any medial reason for not having future pregnancies. The good news is there is no reason why I could not have future pregnancies. However it won't be without risks. The earlier a women delivers the increased risk of having another premature delivery. The shape of my uterus is not a contraindication for future pregnancies. However she was not 100% sure it is truly heart shaped since the surgical report from my c-section indicated a deviation. She said the uterus could have been contracting at that time which made it appear that way. She has seen women with heart shaped uterus deliver healthy, full term babies. She put in her note about a pelvic MRI to get a clear yes or no to about the shape of my uterus. My PCM would need to order it. However knowing this would not change the course of treatment so not sure it's worth the trouble. My recurrent UTIs would require daily antibiotics as a preventive measure. The length of the cervical canal would be measured every 2 weeks since shortening is a sign of labor. I think she said this is done only 16-22 weeks. I would not be required to have an amino or a quad screen since this won't change any treatment during pregnancy. An echocardiogram would be done on the developing baby to look for signs of birth defects. I do have PCOS and endometriosis which is not her specialty. These do have an affect on getting pregnant but were not a factor why I delivered so early. She thinks I may have had a uterine infection, like listeria that affected the uterus and not me in any way. I mentioned the cream cheese I ate at the hotel but she said that is not likely. Listeria can be from lunch meat and unpasteurized cheeses. I mentioned the cats in the back of my Jeep that had their litter box while moving from San Diego to WA but she said no signs of toxoplamosis. Plus she said I probably have antibodies against it. Research has shown that progesterone shots can help prevent premature labor and delivery so I would be a candidate for that too. There is no guarantee that there won't be any problems or that I won't deliver early. She did recommend that both Glenn and I are emotionally ready for whatever will happen. A healthy pregnancy does not guarantee a healthy child but even a child born healthy may get in accident or have cancer so you never know. I have heard that special needs kids tend to progress when they have a sibling to share their life with. I think Abe would enjoy someone to crawl around with. Now it is just a matter of when will we both be emotionally ready. Also with PCOS and endometriosis I don't even know if I can get pregnant or not miscarry. Life is too short to live in fear and we have to trust that God would never give us more than we can handle. Abe is progressing, still has significant delays but using both of his hands and trying to sit up. He currently has as a cold but he is at home and not in the hospital. The neurologist did not feel that his EEG showed evidence of seizures. Neurodevelopmental ARNP thinks Abe might be waking up during the night due to hunger or muscle spasms. If he is having muscle spasms then muscle relaxer medication would be prescribed. Abe says “yeah” and “more” sometimes too. For example when asked “is that yummy” “yeah” and sometimes he says “more” when eating. He only knows all done sign. He is working on more signs. I might let him start classes twice a week at Holly Ridge. This would be a class without me in the room unless I am the parent volunteer that day. He is going to be fitted for stander soon.

I'm 2

Abe is 2 years old, well he will be at 455am. Wow hard to believe that 2 years ago today we went to church, came home and I took a nap. Later that day we watched the movie Fireproof then a few hours after going to bed my water broke and 4 hours later our son was born 14 1/2 weeks early. We celebrated his birthday this past weekend with friends. He is trying to sit up but still needs some practicing. He is also getting braces for his feet to keep his toes from pointing downward. After he gets them he will fitted for a stander. This is a device that he can be strapped into and will allow him to play in a standing position. This will strengthen his truck muscles. He seeing neurology, dentist and the eye doctor this month. We are ruling out seizures and he will have an EEG later this month. The one in July 2009 was abnormal however this was no surprise to the neurologist given the bilateral grad IV brain bleeds. Abe is learning to eat bigger pieces of food and started drinking some cow's milk out of a sipping cup. He will hold it with his left hand and drink it himself, well he spills some too. He will do this for daddy but really for me. While in his high chair he usually just throws it. We thought about doing a night time breastfeeding wean but we both agree that he is not ready for it. I plan to continue breastfeeding longer. I know some people are probably thinking, “he is 2 years old”. He officially learned how breastfeed April 2010 so we are no hurry. We might try the night time wean when Glenn comes home in the summer or if Abe shows signs of wanting to wean. The nurse at Naval Hospital advised but that he would only receive one more synagist,protection shot for RSV. I was not satisfied with that answer so I double checked with the pulmonary doctor at Children's. She wants Abe to receive until RSV season is over. Abe has managed to stay out of the inpatient side since our Arizona trip in September. His pediatrician left the practice to be a stay at home mom. We will miss her however he sees Dr. Wilde now and will have a 24 month old check next week. While I was recovering from surgery Glenn spent time caring for Abe and unpacking our house. This made a little more room for Abe's medical equipment. I am thankful that Glenn got to come home. I had a skin reaction to the blue dye used in the surgical prep plus a bladder infection and post operative pain. I occasionally still get some pain but I am able to care for and lift Abe again. The rash is still there but significantly faded. Glenn will be returning back to his ship and will be gone until summer time. My mom is here for a few weeks. Other things in our life; our 5th wedding anniversary is the 14th, we have only been together one of the 5 and we spent that time at the NICU, we organizers at IKEA which gave us a lot more space, someone has destroyed or completely took our trash can twice in the 3 weeks Glenn was home. They run it over in their truck. We think it may have been the neighbors who were recently asked to move by their landlord. Oh well at least they did not damage our vehicles. This makes it difficult to get trash out of our house. Thankfully we have a trash compacter but it is currently reached it maxed. We would put the bag of trash out tonight but animals may tear it apart. Oh well in some countries there is no waste management to pick up the trash weekly. I am not sure if anyone even reads this blog any longer or not but I still plan to update at least monthly. Pictures can be found on Face Book. I have not updated pictures there lately but it was a busy month, with my surgery and Abe's appointments. Prayer requests: Abe's EEG goes well and he does not show evidence of seizures, the braces and stander work out for him. Also pray for my friend Janet Daniel, her daughter was in a car accident this weekend and was placed on life support. Another friend had a 2 week old baby girl that is super ill. Thanks and Happy February. Spring is almost here.

January 2011

The first thing I can think of today is when is 2011 going to be over. I am so ready for a fresh year. When will my family have no medical issues, no surgeries, no surgical complications, no hospitalizations, no doctors appointments, no pt, ot or speech appointments. Oh wait these appointment will be part of Abe's life probably for the rest of his life. I just want a normal life but as one friend described it today, my life 2 years ago was twisted upside down and sideways. We are thankful for friends and family that are supportive. We are so thankful for Abe and his progress but it is different than a "healthy" kid who only goes in to the doctor for well baby/child checks. I still to this day have no idea why I was selected to carry the burden of caring for a medically complex kid. What did I do wrong or failed to do? He does bring us joy when he giggles at the sound tube toy, tires being tighten at the tire shop or the fork lift sound at Home Depot. he says da, dad to Glenn and it is so cute. Right now he is healthy and has not required any inpatient stays since our vacation to Arizona. He is army crawling and trying to sit up but is not strong enough. He loves to eat real food but is learning to expand to other textures. My surgery went pretty good minus the pain and the contact dermatitis. I must be allergic to something they draped over my belly for the surgery. It is extremely red, bumpy, painful and itchy. I saw general surgery on Friday and went to ER today. They gave me hydrocortisone cream 1% and Benadryl. I personally think I will need a course of oral steroids like I did after the c-section. I thought that one was related to Tide laundry soap but obviously must be the skin prep, surgical sheet or adhesive. There is even redness in the shape of a piece of tape on my back. Last time they did not cover as much area or was not as red but this time it covers the entire abdomen and sides of my back. If the Benadryl I received at the ER today is ineffective then I will need to call general surgery. The next course of action would be oral steroids. Oral steroids will suppress the immune system and hinder healing and put me at high risk for infection; however may be necessary in order to heal the rash. Glenn is here but will need to be back to the ship soon. I ask for prayer that he can stay home for my recovery. Since my immune system is dealing with the allergic reaction the healing process is effective. On a positive note I won't have to deal with gallbladder attacks ever again. I had an attack the night before surgery that lasted all night long. I am thankful that Glenn was able to come home since I am not able to drive or lift Abe.