Dec 31, 2010

I skipped a Christmas letter all together this year but I do want to do a quick summary of 2010. January: had an early celebration of Abe's first birthday; we were not certain he would even make it this far. February: Glenn went left for training for 90 days, Abe hospitalized twice for respiratory infection. March: Women's retreat, Abe did great and enjoyed all the ladies. Thank you to those that helped me there. I got a break which was nice since I was still pretty sick with a cold myself. Stephanie started providing respite care. April: Grandma came to visit for Easter, Tacoma zoo and many ferry trips to Seattle. Abe finally learned to breastfeed at 14 months, 11 months adjusted age. Wow what an uphill battle that was but so worth it. May: Glenn came home for 4 weeks. He put down hard wood flooring, which we love. He did this while he was sick with a cold. We love the new flooring. June: Glenn's ship switched homeports to Diego Garcia. Abe hospitalized for respiratory infection and his surgery was canceled. July: very hot temperatures but we did enjoy the sunshine. Our favorite hang place: the mall because of the AC. We went to pick fresh raspberries in Sequim. Also went to the Lavender Festival with friends. August: Abe had surgery, did so well his admission was canceled so he got to come home that day. Abe's first airplane trip. We went to Arizona to visit my family. I selected this time of the year since I thought it was before cold and flu season. September: We got to visit with friends and family in Arizona, hospitalized for para influzena for 7 days at Phoenix Children's Hospital. San Diego trip was canceled since I also got sick. We really wanted to see all of you and get out of the Arizona heat. October: We went to our first pumpkin patch with friends. Abe was a doctor for Halloween, how fitting for a child with so many inpatient stays and medical appointments. November: Abe received his bath seat. He hated it at first but it is so much easier on the momma's back. We got snow before Thanksgiving. We added 2additional respite providers. We had Thanksgiving with friends who saw Abe his first couple of days of life. December: Abe has a respiratory infection and an ear infection but maintained his oxygen level, continued eating and drinking so he never had to be admitted. I had a few gallbladder attacks including one trip to ER before 6am. I toughed it out the first night for 6 hours but a few nights later it felt like my gallbladder was going to explode. It is super freaky when you can feel a mass in the right upper quadrant of your abdomen. I was in so much pain and I did not know why. I thought it was my gallbladder, but oh smokes, the pain is worst than kidney stones. Abe meant Santa at the EFM party, NICU party and a few other parties with friends. We spent Christmas Eve dinner with a friend and church service, Christmas morning with new friends. Glenn may get to come home for my surgery but not 100% sure. The cost of the ticket is all on us however I won't be able to lift Abe for awhile. He will be home for a short time only then back to Diego Garcia. We had planned to go to a friend’s house tonight but with the freezing temperatures and potential for icy roads we decided to stay home. So to sum it up 2010: 4 inpatient stays for Abe, Glenn was home January and May only, new flooring/ paint and a wall was knocked out, no more pumping unless Abe is sick and does not want to eat, 6 months of the deployment out of the way, started working Mary Kay again. Abe's milestones: 20 lbs 15 oz which is underweight but with 7 hospital stays in 19 months he deserves a little break, 33.3 inches tall. Army crawling, rolling, back to belly, belly to back, gets into thing he should not, he grabs stuff from the other side of the baby gate, can tolerate some regular food but not big on crackers, although he did eat some after he hang out with Logan and Nate, says momma, da, da, ding, ding, ding, hi sometimes, he claps on his on command and waves hi and bye sometimes. He is working on sitting up but is not strong enough. Unlike most 22 month, 19 month adjusted age, he does not feed, sit up or walk. He is also working on crawling with stomach off the floor but he struggles with this. He starts speech therapy in January. He loves DVD such as Veggie Tales and Baby Einstein. I really don't want him watching DVD or TV yet but it keeps him from crying while I scope the cat litter and take out the trash. He also watches a DVD of Daddy reading to him. So much for short, huh? Happy New Year 2011. We hope for no hospital admissions ever again for Abe. I will continue the blog probably month as my life is filled with many medical, dental and therapy appointments for Abraham, hopefully Glenn will put some more pictures on the blog since not everyone is on Face Book. Abe's birthday party will probably be January 30, 2011.

No fat

My surgery is scheduled for January 2011 unless an emergency arises. So far been doing fine but so difficult to follow non/low fat diet at this time of the year. The chocolate cake at the Madigan NICU party was tempting but I skipped it, not worth the pain or having to have gallbladder surgery due to an infected organ. Glenn might get to come home but not 100% official. Honestly I think his job here at home caring for a breastfed baby that won't be able to for 3 days will be more difficult than what he is currently doing. I plan to ask Abe's doctor if I would need to wait 3 days post op to resume breastfeeding. The surgeon said I would need to pump and dump. Just when I thought my pumping days were over. I will give an update on this later. I could be wrong but when Abe gets mad he bangs his head into you and it hurts plus he crys and fusses. I am just hoping and praying to remind stable until the surgery. The pain was worse than kidney stones. The gallstone is 1.7 cm so is considered to be large. The recovery should be easy but lifting and bending restrictions so I would not be able to care for Abe after surgery. We are waiting to hear more from Glenn if everything is good to go. Abe is trying to sit up but can't make it. He does not fall over though but rather slowly lowers his body to the floor. He will start speech therapy in January and will continue PT, OT and therapy class. His sleep study was completely normal. I need to start a night time breastfeeding wean but not sure the timing is right. I need energy to get ready for surgery. Please pray that I remain stable, Abe stays healthy and Glenn makes home and back safely.

Mommy

Prayer Request

All I can say is at least this did not happend while I was pregnant or when Abe has been in hospital
I have had 2 gallbladder attacks In 4 days. This included a 430am trip to ER by ambulance. The pain is currently controlled with non-fat and low-fat diet. The ultrasound revealed gallstones and a general surgery consult was placed. My appointment is today. This would be simple if Glenn were homebut the reality of military life is he is not. There is potential for emergency surgery but we are praying for it to be scheduled and a plan in place. So far I am working on a plan with the assistance of the Military Special Families Support Group, SBC and friends. I found a medical POA for Abe while I am in surgery in case he requires medical attention. Prayer request include: pain is controled with diet, gallbladder does not become infected, plan goes smoothly, Abe stays healthy and for Glenn to possibly be present to care for us. There will be diet, driving, and lifting restrictions after surgery.We get Abe's sleep study results today then my appointment. So a busy day. We probably won't be at Madigan NICU party this weekend.Thank you friends and family for caring for us

Clap your hands, 22 months

Wow Abe is 22 months old now, can you believe it? Almost 2 years ago we were faced with decisions to continue CPR and keep life support on. Now we can't keep him in one place or from dropping stuff off the counter where his highchair is. He waves hi and bye and claps his hands. He even stopped breastfeeding because I told him to clap his hands. What a mean mommy. He is still breastfeeding so the pumping days are way over except during illness and hospitalizations. His last hospital stay was in Arizona in September. We are planning to keep him out of that place. He sees pulmonary this week to get the sleep study results. He is currently on antibiotics are an ear infection and I have was sick as well. He is doing well and mantained his eating, drinking and oxygen so he stayed at home. He will be starting speech therapy in January, should have been sooner but I don't think anyone wanted to modify his ISFP. I have asked repeatly when will he start speech therapy. His birthday party will be January 30 or the day before Super Bowl Sunday 2011, the 5th I think. He still wakes up all night but I will begin a breastfeeding night time wean soon. My plan is to continue to breast feed until May or maybe even longer. After all it took him 14 months to learn and it provides immune protection for him and decreases the breast cancer risk for me. I asked for a referal to the Madigan OB/GYN (would handle high risk pregnancies or other complex GYN things) I discuss the benefits/risks/recommendations for future children. Glenn does not come back for 6 months but they recommend the earlier the better. Glenn agrees that I should begin talking to them before he returns. Not sure I can mentally, physically, emotionally or spirtuality go through went I have already went thru and continue to go thru but every pregnancy is different and now they will return my calls and listen to my concerns. No firm decisions have been made in this area. We have no idea if I can even get pregnant as easliy as I did before or if I could carry to term. We ask for prayer for guidance for this. Glenn's skype name is abrahamgoodard and mine is lilnurse98 if anyone would like to skype. Not even sure if anyone follows this blog any more or not since most pictures are posted on facebook.

Big boy 21 months

Wow Abe is making strides, leaps and bounds. Finally time to childproof the house. He is exploring everything. I ordered a gate online from One Step Ahead. Hopefully it will work. If my handy man husband was not playing salior then he could have made one to keep Abe safe. I guess the USN owns him so what more can I say. I am just thankful the new flooring was put down in the upstairs living area.He loves to eat now but we have to feed him. We need to give him something that won't stain his clothes up and let him experiment feeding himself. Sorry Abe raspberries are out, lol. He feels like he weighs 21 lbs now. His next weight check will probably be after Thanksgiving. He has a sleep study that might tell us why he still wakes up 4-6 or more times every single night. Makes for one tired mommy. I think caffiene is what keeps me going but I went a few days without it and made no difference in his sleep pattern. We added 2 additional respite providers this month. I am determined to use all 40 hours because every mom needs a break. MOPS speech was on stress last Friday. Very great speech and I had respite so I actually got to listen. Also the speech at mug n muffins really touched my heart and had me crying. We made it game night and had a blast too. Guess mommy is super tired because of all the activities we did over the last few weeks. Oh I am super excited that I have been able to do some Mary Kay again. I will try to update once we know the sleep study results. I also plan to start a night time wean of breast feeding with the hope that he will sleep all night.

Mover and Shaker

Wow is all I can say. Abe has made so much progress in the last month. He moves to find things that is not supposed to play with, typical toddler, right? His vision seems to have improved as well. He sees the eye doctor next month. He still wakes up 4-6 times at night but has been going to sleep between 1030-midnight and will stay in his own bed until I go to sleep. For some reason no matter how quite I am he knows that something is different, the light goes off so he wakes up. I don't turn the lights on when he wakes up at night. He has a sleep study next month to check for sleep apnea. I hope he does not have it because I can't see him keeping a CPAP on. He won't even keep sunglasses, hats or socks on. Yes he takes his socks off himself like his buddies do. I am concerned about the uneven flooring in my front room. Abe moved over there and hung his head over the side. I am excited to see him so active and moving but it is scary too. Since he is so mobile now colds and flus might hit his less so he does not even up in the hospital. He had a flu shot and so did I. Although I had mixed feelings about it this year. I was a little nausated for a few nights after but none of the side effects that the hype is all about. He is wanting to eat more foods. GI might take him off the GERD medication when the last bottle is empty. I will try my best to update this blog monthly. Pictures are on facebook.

20 months old

Abe and I had one heck of a trip to Arizona. The heat was difficult, carseat installation and 7 day admission to Phoenix Children's Hospital for parainfluzena type 2 and possible VP shunt failure. I heard that the heat broke records in Arizona as being one of the hottest one in awhile. Sorry we missed San Diego but I wanted to keep him close by in case he needed to be readmitted. He continued to vomit and have coarse breath sounds even after hospital discharge. I must say that Seattle Children's is awesome. Very sad about the medication overdoses. Please keep those nurses and family in your prayers. I did not hear the news directly but an event occured that resulted in a death of a young child. Abe is no longer vomiting however he lost 2 lbs while he was sick. We are waiting for referral to GI clinic for follow up reguarding vomiting and GERD. He has been vomiting on and off since late July, early August. He might be a kid that can't handle the heat too. He really liked the incubator that controls the environmental temperature. If you remember he had to be put back in it 3x before he graduated from the NICU. He crawled today completely off his play mat foam. He rolls from his back to his belly when he feels well. He moves around looking for toys or stuff that he is not supposed to get into, typical boy,lol. Now we just need to keep him healthy during cold,flu and RSV season so the hospital is not our second home. Tricare denied a brain MRI but the neurosurgery team, pediatrician and ECHO case manager helping us appeal this. Now it is up to me as a parent to print and fax in their letter and my letter. Wow I feel like I am working as RN again. Our Fall schedule is so busy with appointments, Little Tikes class, MOPS and some social events. I just ask for prayer that he stays healthy. I am a social person and I love to be around people. He seems to be social as well. He fits right in with a room of screaming, noisy kids.Which is great since some premature babies can't handle the stimulation. Not sure if anyone still follows this blog but I am trying to make an effort to update at least monthly.

Pray

Pray for Abe. He is still inpatient in Phoenix and it is horrible. Staff does not believe me when I tell them his oxygen level is low. How would they know it only alarms in the room and not outside. I think today I will keep the door open even though he has the flu and I have symptoms too. He is still vomiting,has foul smelling diarrhea which I hope is not C-diff and has lost 2lbs. Pulmonary talked like we would go home Friday. Seems like they tthink we are here because we want to be. We are supposed to be in San Diego. Which place would you rather be, a hospital or Sea World, the zoo, Cheese Cake Factory. We did not come all this way to be stuck in a hospital that barely has any hand gel. I guess Children's in Seattle has the title "World Class" for a reason. Based on our experience now we could never move to Arizona. Some nurses have a knack to work with kids and some would be better equipped to work with prision immates. Thankfully everyone has a different personality to care for patients. I wanted Abe to have Labuterol due to desats and cough but they would not give it to him because he sounded clear. They did not see or hear the desats to 86% on room air nor hear the coughing afterwards. Parents know their child better than any other person ever will. I will discuss with pulmonary today. If we were at home and his monitor kept alarming off and position changes would only help temporary and he started coughing I would give the Albuterol inhaler. Why the heck won't they give it here??? There is a doctor's order for it. One thing I don't like about admissions is I have no control over medications. Next time I think my kid needs Albuterol and it is refused to us, even with a doctor's order I am asking to speak to charge nurse. Please pray our next nurse has more patience to listen to a mom of a complex kid who also has been an RN for 11 years including peds nurse and has worked in health care since 1992.

7th admission-

Bummer that is all I can say. Abe has been vomiting, irritable and had a fever so we brought him to Phoenix Children's Hospital on Wednesday night. This hospital is way different than Seattle. He is still vomiting, treated with IV antibiotics for ear infection. they are also looking at his VP shunt, potential VP shunt failure or infection. I am waiting for the results of the abdominal ultrasound to see if a cyst has developed at the tip of the shunt. I really want the neurosurgeon here to get in touch with neurosurgery in Seattle since I trust them and they know my kid and his complexity. I will make sure to get a copy of ct films before I ever leave town again. Might have to cancel San Diego trip. I need to get back to Abe's room so I can talk to neurosurgeon. He is currently sleeping in his swing but was refusing to eat ice cream, yes my kid was refusing ice cream so you know something seriously is wrong. Pray for him and for me. The nurses last night were extra quite so we could sleep.

Surgery

Abe's surgery went so well that he got to come home instead of being admitted. We stopped by NICU and medical unit to say hi to the staff we know. The NICU doctor that admitted him at Children's last year was so happy to see him doing so well. He is 20 lbs now and 79cm. I got tearful while talking to him because I remember having a difficult conversation last year if we should stop all care. I thought he was going to be unresponsive and unaware of his environment so I questioned his quality of life. It costs millions of dollars to keep him alive in NICU. He was very professional when we had these conversations last year and advised for us to keep going and see what happens. I am so thankful that we kept going. Abe is responsive to his enviroment and is finally rolling from his back to his belly. His trunk and head control has improved. Abe truely is a blessing. He does have some needs beyond other kids but was given to the right family. A father with job security in the Navy for health insurance, income, bulid him stuff, read to him, rough house play and naptime and a mother with nursing experience to advocate for him with all the medical/surgical interventions .Based on Glenn's emails he really misses his son and loves him. I included in his care package a picture Abe colored in his class (well mommy and the teacher helped). I did not explain what it was I just sent it. Glenn emailed me to ask if Abe colored it. Daddy got his first picture from Abe, how sweet. He will take his first airplane ride soon if he continues to do well and not have any post surgical complications.

18 months old

Just 18 months ago my family faced life and death for our newborn baby, Abraham. It was awhile ago but sometimes it seems like just yesterday. I barely got to look at him from a distance, got to touch him for the first time over 12 hours later and hold him at hospital #3 two weeks after birth. I remember a Madigan doctor calling, stating while getting choked up with tears, “Do you want us to continue life saving techniques; he is fighting to not be with us any longer”. He required more than chest compressions and artificial breathing but also epinephrine a few times. What this means is that his body was oxygen deprived for so long despite artificial breathes and compressions that he needed a strong medication for his body to get the message to circulate blood. So in reality he probably did die during this time. God very well could have taken him to heaven that day. However God choose for him to live. He is stable now however his risk of infection is still very high due to low muscle tone of his core muscles and chronic lung disease or an older name for it BPD (bronchopulmonary dysplasia). Nature designed babies to be born at a certain gestational age for a reason: lungs, heart, brain and everything is fully developed and the human life is ready to handle being in the outside world. Abe’s lungs were not ready to deal with breathing which caused abnormal formation of lung tissue including inflammation and scar tissue. Some might say I am paranoid about him getting sick but it is not an abnormal fear in my book. He has been admitted to the hospital 6 times in a 16 month time frame. NICU for over 96 days, VP shunt surgery last August, H1N1 with pneumonia in November over Thanksgiving, other respiratory infections: February twice (10 days after Glenn left for training and 2 weeks after that discharge) and most recently June 2010. The CDC has some great information on guidelines for preventing the spread of infectious diseases such as the common cold and flu. A cold typically makes someone feel bad but majority are not admitted the hospital for it. Some might say, Oh she has it easy, only one kid and he does not get into things. Reality again he is developmentally delayed. Most 15 month old kids are walking, sitting up and sticking cereal in their mouths. When he is 13 years old and weighs 90 or more lbs he still might be sitting in a chair and his mom and dad will have to lift him out of his booster/car seat into his wheelchair. I did not choose to have a premature baby or one with chronic complex health needs but was rather chosen. Majority of people are not equip to care or advocate for a child like Abe. So I ask that I am not judged for protecting my child from infection, after all his surgery is scheduled in less than 2 weeks and was already rescheduled due to illness and admission. Please pray that he stays healthy enough for surgery and is able to visit Arizona. We already have a wedding reception and a birthday party to attend during our visit.

July 2010

This is the monthly update at the end of the month. Better late than never. Abe's surgery was canceled because he was admitted for a respiratory infection in June. We tried to manage it at home but he was not maintaining his oxygen saturations and was not eating. He spent 5 nights at Children's Hospital. He is doing well now, gained back the weight he lost. He was 19 lbs 12 oz at last week's appoinment. He is also getting so tall. His surgery will be in August. If everything goes smoothly then he will be taking his first airplane trip (he was on a helicopter that the day he was born) to Arizona. We also plan to drive to San Diego from Phoenix to visit our friends there. For safety reasons I am not posting actual dates in this blog. I can personally give you exact dates privately. He started parent/child swimming. The pool is cold but he seems to enjoy being in the water. The goal was to loosen his muscles but he is pretty tight in there due to the temperature. He is exhibiting normal toddler behaviors, he drops his toys and laughs, knocks the spoon out of my hand. He is currently getting his molars in, oh fun. He is eating more solids but still prefers pureed foods. We are working on more advanced foods and textures. He loves Mexican food, beans and rice with melted cheese. He has a new OT through Holly Ridge. He started his little tikes therapy class. He does okay but some times gets over stimulated with the other kids there. The class is weekly at 9am. This is difficult for us because we are both late night people. He has PT weekly, baby story time and OT 3 times per month. He says mom or momma when he needs something. His muscle control is delayed but he is getting stronger. He wants to type on my computer right now. will update after his surgery in August.

June 2010

It has been awhile since I updated here. Again I update with pictures on face book almost daily. Abe had a cold a while back and so did Glenn. Abe did not have to be admitted this time around because he continued to eat and did not require oxygen. The big oxygen tank has been removed from our home, yeah. Glenn and some people from church assisted him in puting down Oak hardwood flooring in the front room. Ideally we wanted to do the entire house, minus the bathrooms but Glenn ran out of time. He deployed with his ship this week. It has been a rough week for some strange reason. Usually deployments don't start out this bad. This is our first one, other than him being gone for 3 months for training, since Abe was born. Maybe it is more difficult because he was gone, came home for 1 month then deployed. That month went so fast. he got a lot done even with the cold. Abe might have a minor cold again and he is scheduled for surgery Monday morning at Children's Hospital. He saw his doctor today and she suggested to keep the surgery scheduled and see how he does over the weekend. He is still waking up at night which is could be the sleep apnea. The sleep study is in November. He is progressing social skills, loves to drop all of his toys, especially the big ones onto the floor to hear the crash. He giggles his head off when he does this too. Pictures were not updated on this because it requires both Glenn and my computer for some reason. Please pray that his surgery goes well. He might go home that day or be admitted. We are not sure. If he is admitted it will probably be just over night. We plan to take it easy next week after his surgery. We have been busy walking, play groups and I started doing more with my Mary Kay. I would love to start scrapbooking again. Just when to find the time???Abe only naps on the go. He will nap at home if I hold him but I gently put him down and he wakes up crying. I pat his belly and he just continues. I walk again and it gets louder. The solution is for me to walk to get exercise and he gets to nap. This does not help the house stay clean. He is getting molars in. He has tooth decay which was very disappointing to hear. I heard this is common for premature babies and babies with a history of reflux. That is it for now I need to continue preparing for Monday's surgery. I will try to update after his surgery.

15 Months old

Abe is 15 months, corrected age 12 months. Wow we really did not know if Abe would make it this far. New pictures will be updated when Glenn returns home next week. I will start head to toe like I tried to do as FNP student. Neurosurgery: VP shunt is fine no current need for new one to be surgically placed right now. He has a haste MRI scheduled for October or November then he will see neurosurgery NP to adjust the VP shunt. His hair is growing well and soon the shunt will not be as noticeable. Eyes: eye doctor at Children’s left a voice mail, they assessed that he sees 20/710 and has cortical vision loss (CVL). This is a result of damage the optic nerve and the brain’s ability to process what he sees; therefore glasses will not help the problem. I personally need to read up on it myself because I don’t remember learning about it in nursing school. He also has stage 2 ROP. He has an eye specialist from the school district coming 2x month to work on vision exercises. I have found it to be beneficial. This teacher, Pam, brought info on on-line free courses that Glenn and I can take to help with visional impairment. I will see if his respite providers can also take the classes free of charge. Also we can order books from the library for the blind. The home therapists never gave us any information about the library or the classes so I am so glad I said “YES” I want my kid to have a vision teacher and was not pressured to decline additional services. He has an eye appt. at Children’s at the end of this month. Ears: he passed the behavioral hearing test however struggled with low tones and favored looking to the right over the left. We are not sure if he has hearing loss for low tones since most babies don’t find low tones as interesting as high pitched tones. We also wonder if he liked the toy on the right over the one on the left. Nose: just growing bigger. Mouth: more teeth, more teeth and all that goes with that. I am concerned about one because it has a yellow appearance. I think he has 6-7 teeth. When Glenn left he had only 2. He passed the swallow study but was mad as mad can be during it. He caught on that barium is not a great thing to drink. Despite having an uncoordinated suck at times due to his fussiness he managed to protect his airway. They did see a delayed swallow but he was so mad during the whole exam. Chest: his lungs are good but he is still at high risk for infection due to developmental delay and lower muscle tone. Option care picked up the big oxygen tank out of own home. He has only required oxygen a few times while sick. We use the oxygen monitor occasionally at night only. He is so much more portable. He still has desaturations of oxygen during the night to 84 % which could be attributed to obstructive sleep apnea. Sleep study scheduled in November. Pulmonary feels this is why he wakes up frequently during the night. GI/Abdomen: He still suffers from GERD and we have found the compounded reflux medication we get at Children’s to work better than sol u tabs. He has an appointment with GI at Children’s to discuss the reflex per Pulmonary’s recommendation. GU: he will be having surgery to bring his testicles into his scrotum June 21st. They are not undescended testicles they are just too high canal. This will be an outpatient surgery unless complications arise or they decide to admit him. Motor: he has hyper muscle tone however I have also heard some professionals say low tone. He keeps his right hand very tight and fisted. He does keep it open occasionally and has a splint to assist with this. He is working with home OT and outpatient PT. He can sit briefly unassisted but he tends to be in the tripod position and is distracted by a toy. He has strong abdominal muscles and was able to bring himself to a sitting position while he was sideways on the boppy pillow on my lap. Development: eating more solids, he is working on different textures including apple puffs and baby teething cookies, but prefers apple sauce consistency. He drops his toys behind his back while looking at me while he laughs. He knows I hate his toys on the floor because I have to wash them. He has finally mastered breastfeeding so momma is not tied to a pump. Wow I have more time now. Amazing I could have switched to formula months ago but choose not to. Still have milk in the deep freezer too. I will probably become a lactation consultant in the future. He was 19 lbs, 2 feet 5 inches last week. Social: Glenn returns home next week briefly before deployment and new hardwood flooring will be installed. I am entering him into the Little Heroes Project. Just need to find a way to sum up his story to enter it. I participate in the Military Special Families Support Group monthly. Last month they had the Navy Secretary and a congressman come to hear family stories about the impact respite care has provided. Due to a time crunch I did not verbally participate but our story was included in a book with family photograph. Last I heard the book was delivered to President Obama. Not sure if he will actually read it but the goal is to get respite care for all military families with special needs children. Currently it is only available only in a few locations. Well Abe is waking up from a nap so guess it is time to go.

April 2010

Abraham is gaining weight and is staying healthy. Has been respiratory infection free for 1 month now. He is teething and just had MMR and Pneumonia vaccination. I was going to wait for these vaccinations until he was a little older however a core man at Naval Hospital mentioned 6 confirmed cases of measles in Vancouver,Canada. Washington is not very far from the border and we go to Children's in Seattle a lot so I did not want to take any chances. He saw neurodevelopment a few weeks ago. Changes: motor skills: greater than 5 months but delayed; social skills: 6-9 months. She recommended that he is evaluated by the therapy dept at Children's. I was discouraged by the home therapist to have this done however decided to pursue it since 4 professionals recommend it. I would kick myself later if I did not have it done. We are in the process of setting this up. He has early intervention services,PT and an eye specialist from the school district. Nutrition: He is gaining weight and getting taller, he is 18 lbs 11 oz and 2 feet 4 inches. I have decreased the number of times I pump per day (but still tied to pump machine) and am encouraging nursing rather than bottle feeding. This has been a bit stressful since it is a major change. Still have frozen milk to use. Looking forward to that day when more food can be stored in the deep freezer and less breast milk. He is learning to drink from a sippy cup and a toddler water bottle. He ate steak and peas for Easter, not steak the way adults would eat it. His favorite solid food is mangoes. This month he sees: pulmonary (maybe oxygen sat monitor wean, only using at night), neurosurgery, hearing test and swallow study. He sees the eye doctor at Children's in May. He is also having an eye specialist from the school district doing an evaluation for his vision impairment. Social: dad, Glenn, will be gone for 1 more month then come home briefly, Grandma Tomlinson is visiting for Easter and respite care with Stephanie started. Abe's former NICU roommate is over 18 lbs and is so cute, will post pics in late May. He never got to go to his home but is in a group home with his mother. The father and school age son occasionally make the 4 hour trip to see the baby and mother. It breaks my heart that he is so far from his whole family. I plan to go and visit Maria the mother some time. Abe, Stephanie and I visited the Fisher House, It was nice Glenn was able to check on our home in Florida and visit friends and family. My mom is helping to get the house ready for the hard wood flooring, hint, hint Glenn!!!! I will continue to try for monthly updates on his blog.

Hospital stay #5

Abraham was in-patient for 2 upper respiratory infections since 2/10/10. I tried to update during his last stay but it did not save. I do daily, probably annoying updates on face book but not everyone that read this is on face book, Mom!!!. Any ways Abe is home now after a 3 night stay, felt longer than that. I am sick to and if I don't get better or I get worse than I am going to be seen my doctor too. Go figure Glenn is gone for 1 month. The day after he leaves we don't have any hot water. The neighbor replaced a part on it but since it is a gas water heater we might be at risk for carbon monoxide poisoning due to ventilation issues with the house. Abe got very irritable last month and I thought carbon monoxide poisoning so I called poison control was suggested 911 fire dept. They came out and found no C02. Abe just was getting sick. We spent 2/10-2/14/10 (Glenn and my 4th anniversary) at Children then 2/27-3/2/10. Abe is losing weight again but has been sick twice in 1 month. He is better now but now momma is sick. I am hesitate to do social things now because it's one thing to have a kid that has to stay home from school due to illness and one that requires hospitalization with painful procedures. New changes with Abe: occasional oxygen need when sick, he is rolling more, started PT, eating more solids including peas and mangoes,has 3 teeth, has more hair, is 2 feet 3 inches, is saying more sounds: "ba" "da" "mamma" and is trying to say "poop" thanks to Glenn(for those that don't know him, he is very funny) and loves to hear daddy's voice in our teddy bears or over the computer web cam. He sees the dentist, neurodevelopment this month. His PCM had a baby boy so he will be followed by another doctor while she is out. He is looking at my computer right now, probably wondering where daddy is. I have not been able to talk on the phone much because talking increases my coughing then I have a difficult time breathing. I am not currently coughing but will seek medical attention if necessary. I considered not pumping any longer but Glenn says I could stop when Abe can eat a large steak without assistance, lol. I plan to continue until May to get us through cold/flu season. Social: Abe is a flirt, daddy comes back home in May, might do March of Dimes walk to raise awarness about premature babies, respite care should start as soon as fingerprinting and background checks are done and Grandma Tomlinson comes to visit in April for 2 weeks around Easter time. Pictures will be updated as soon as Glenn can walk me through it. My energy is fading and I am beginning to cough so that is it for now. Might only update monthly.

Birthday Boy

Abe just had his 1st birthday. I mailed out 1st birthday photo cards. Can you believe that this 2.2 pounder is now over 17 pounds and 27 inches long? He did not want to wake up so early that day and was a little cranky all day until he saw his doctor and the OB nurses at Naval Hospital. He has a little cold and so do I. I think mine might be a sinus infection. Medical status update: He started PT this week and seemed to click well with her. We have to drive 20 miles there and 20 miles home but it is a nice place. His doctor recommended this office. He saw neurosurgery last week. CT scan is stable, no need for shunt replacement at this time and brain growth. Next neurosurgery appt. 3 months, CT scan 6 months unless he has some issues. He will see urology for an undescended testicle this month. He also sees endocrinology. Growth/development: he is losing a little weight but is getting taller, I had him on the play mat today while doing dishes and when I glanced over he had moved positions without assistance, he is trying new sounds and still takes the spoon from me while he eats. He still has vision problems. We are supposed to have a vision evaluation from someone at the local school. I canceled his home OT appointment because he was sneezing, coughing, runny nose and just not himself. Social update: Glenn left to MI until May. The day after he left we did not have any hot water. The neighbor looked at it and it has to do with the exhaust venting outside the house. Right now I can't run the furnace and hot water heater at the same time due to the risk of carbon monoxide build up in the house. The neighbor does heating/cooling for a living so hopefully he will follow up soon. We do have working carbon monoxide detectors in the house so mom don't worry. Oh a different note I have learned that not all baby products work in all situations. The Moby wrap is great for small babies but kills the back for bigger/heavier babies. The Ergo baby is better and easier to use for bigger babies. I guess you have to try stuff out to really know if it will work well for you or not. The Moby worked great when Abe was smaller and did not move as much. One word advice for those expecting a new baby, read on-line reviews of infant items because most of them are pretty accurate. This will assist with deciding what items you will need and get the most use out of. Some items will have reviews: it rips, it is heavy to lift into the car, takes too long to figure out, ect.

1/24/10

On 2/2/10 Abe will officially be 1, can you believe it? God surely has done some great work for this boy. He had his first birthday party this weekend and he was dedicated at the church service. We had fun at the birthday party. Thanks to all of you that attended. We appreciate all the love and support that our family has received over the last year during our ups and downs, celebrations and re-hospitalizations. Glenn will be leaving for 3 months next week. He will come home for a short time then will be deployed to Diego Garcia until next year. He has only required oxygen 3 times over the last 3 weeks while he is sleeping at night. Since he removes the nasal cannula off his face we just keep the oxygen on blow by at 0.1 liters per minute. I can officially take him off of the monitor but I don't feel comfortable. His last blood work was normal, yeah, no more respiratory acidosis. Now we just need to keep him healthy. He will be receiving the RSV immunoglobin this week and he seeing neurosurgery. His last CT scan was stable. Sorry if I am repeating prior information. I don't update as much as I use to. Probably because I have a lot more to do now than sit around a hospital. I meet friends to walk around the mall, bible studies, MOPs and shopping. He was almost 18 pounds at this last appointment. There are some new pictures. You have to click on the top pictures then select Glenn picasa, "Abraham's birthday". Glenn just re-enlisted for another 6 years. I will update again if anything changes with the CT scan this week.

11 months old

New pictures will be in a few days. I hope everyone had an awesome Christmas and New Years. Sorry I have not updated in awhile. Neurosurgery: VP shunt is draining too quickly but CT scan on 12/31/09 was stable, therefore no additional surgery at this time. We go back to Seattle on the 28th. Respiratory system: oxygen wean, no oxygen at night if oxygen sats are 90-91%, occasional drips lower are fine. Cardiovascular: echocardiogram showed no evidence of strain on his heart. He can be off oxygen and monitor during the day except oxygen while in car seat. I left the monitor at home to take him to church tonight however I connected the oxygen up. The other day I left monitor on but no oxygen and he was 98% on room air even in car seat. He was close to outgrowing his car seat and stroller so he has a new one and for some reason his oxygen level lowers when he falls asleep in it. Technically I can discontinue use of monitor during the night starting tonight but I am too nervous to do so. His risk of SIDS is lower because he is older but hey I still have the monitor why not continue to use at night. Growth/development: 17 pounds 6 oz and length 2 feet 3 inches (69.12 cm). He is growing but most of the health care professionals are still concerned about this. He is eating solids. In fact he has to have his own spoon and sometimes does not want me to feed him. I end up putting more on his spoon and some ends up in his mouth and most all over the place. He is using his right hand more than he used to but still favors the left. He has progressed to level 1 nipple on the bottle and continues to breastfeed on occasion. Can?t believe I made it over 11 months of pumping. It has helped him and decreased my risk of breast cancer but it is so tiring. It?s like double feeding if you think about it. I breastfeed him, pump then bottle feed him. He is passing toys between both hands. I would say he is functioning at a 5 month old level however just barely starting to roll. Eyes: vision still an issue; Appears to be more aware of surroundings. Social: still smiling and I noticed this laugh this past week. Apparently dad noticed it months ago. Guess Dad is silly compared to mommy. We are celebrating his life, AKA 1st birthday on January 24th since Glenn leaves on 2/1/10. I decided to stay here in WA since we own our house and I already have friends here. We still need to put down the hardwood flooring and finish unpacking. I am looking forward to respite so at least unpacking and cleaning can be done. I will be busy in normal activities other than medical appointments, such as 2 women?s bible studies, walking the mall with other moms, MOPS and scrapbooking I hope. On a side note, a friend recommended butternut squash to feed him. I have never purchased or tasted it before. Wow it so yummy and packed with calcium, iron and vitamin A.