Asher's surgery went great! It was very stressful but he's already up and crawling around. He had a hard time coming out of the anesthesia but he's doing really well now. His urologist said that he tried to reinforce the area of the hole twice as much as he usually would. He did say there is a chance that this could happen again because the location Asher's shunt drains is right above this area. I'm really hoping this is our last surgery for this issue.
Thank you everyone for all your thoughts and prayers.
We've suspected for a while that Asher has an inguinal hernia. We've noticed while giving him a bath that the right side of his groin area is getting very large and swollen. I took him to his second urorolgist appointment on Monday and the doctor told me that it not only looks like a hernia but that his hydrocele has also come back. Asher had surgery for a hydrocele about a year ago but because the hole was so large it seems like it has reopened. The doctor said that this is uncommon but it does happen. The surgery was scheduled for the end of April but the area is staying enlarged for longer periods of time and the doctor thought it would be a good idea to move it up. I wasn't expecting it to be scheduled so soon (tomorrow) but I'm glad that it's going to be taken care of and I'm hoping that we won't have to go through this again.
Playing with Mom's scarf
On a lighter note...we ordered Asher's Kaye posterior rolling walker yesterday. I also ordered the blue camo decals to go on it to make it a little more fun. There weren't a lot of options to choose from. The rep from the company asked me if my husband is a hunter which I thought was really funny. I didn't think camo was just for hunters anymore? Mark asked whether the guy thought he was out hunting smurfs. Too funny. We also ordered Asher's new afo's and decided on the jolly roger (skull & crossbones) pattern. I think they'll be so cute. I went back and forth a few times on the pattern. I'm sure the lady at the orthotists office thought I was completely neurotic. The last time I made Mark call and change it because I was so embarrased. We should be getting them in about a week.
I took Asher to see the orthotist today. He's been having some problems with his current AFOs. His current ankle/foot braces are an smo/afo combo (a smaller ankle height brace that can be worn alone or snapped into the bigger calf height brace) The afos are supposed to keep him from being able to walk on his toes but that hasn't been the case. Everytime I take his shoes off I notice that he's pulled out of the smos and his heel is getting caught. I couldn't figure out what was going on for a while, I just knew he cried and fussed until I took them off. The orthotist was able to add some extra padding in his current afos to fix to the problem but recasted Asher and said we needed to order a new pair. I know this sounds silly but I get very picky when I have to choose the design for his afos. I guess I just feel that if this is something we have to have I want it to be the cutest we can get. I'll include some pics when we get the new afos. I'm trying to decide between the skull and crossbones pattern or the space pattern (opinions are welcome), I even called the company and had them email pictures of what the pattern looks like on the actual afos (all the website had was the different patterns).
We got Asher a new Kettler trike yesterday. We thought it would be great because you can buy a seatbelt and a parent controlled pushbar but I don't think the pushbar is going to let us steer it around as easily as we would like. This whole search started because Asher hates riding around in his stroller but loves to be outside. We started looking at smart trikes but they just seem so plasticy and cheap (but not a cheap price tag). We've started the search all over but have seen a promising schwinn tricycle that may be a good fit. Hopefully we find something that will work and make walks a little easier.
I really want to acknowledge what a great husband I have. The past few nights he has taken care of Asher and given him a bath after dinner so I can have some time to myself to decompress. He did a lot of stretching last night with Asher and it really paid off. (We try to stretch him out twice a day to keep his muscles from getting too tight.) While I was giving him a snack today he long sat all by himself!
I also wanted to give an update on the whole gait trainer/walker situation. It looks like we'll most likely be going with a kaye posterior rolling walker for Asher. It's light weight and he seems to be doing really well with it. I did ask his physical therapist about the snugseat crocodile but I know it's a little larger and heavier so the kaye may work out better. In the past month he has progressed really quickly with his walking. At first he struggled in the gait trainer but now he's doing great in the walker. I'm so proud of him.
A few people have asked me to explain exactly what Asher's challenges are and what his condition is like currently. Asher has muscle tightness (spasticity) in his entire body but his right side seems to be the most effected. For a long time Asher would only belly crawl but now he is able to crawl on hands and knees and is doing a lot of knee walking (I think it makes him feel like a big boy). Asher is able to cruise along furniture but is not able to stand on his own or walk yet. Because of the tightness he stands/walks up on his toes and needs to wear ankle/foot braces to correct this and to correct his left foot from rolling in or pronating. Now that Asher is working on walking in his gait trainer we are also noticing that his is turning his left leg inward at the hip. We are in the process of trying to correct this and are still trying to decide on the best solution. Asher primarily uses his left hand to play, eat, and hold his sippy cup but he can use his right hand to some extent. He can't fully extend his right arm but doesn't ignore that hand/arm altogether which can be the case for some children with cerebral palsy. He has a hand and elbow splint that we are using to help with these issues.
The overall muscle tightness in Asher's body also affects the muscles used for eating and speech. Children with cerebral palsy tend to also have difficulties with breath control which can make speaking more difficult and seem more choppy. Asher is showing progress in both these areas but we still have a ways to go. Because of the lack of verbal communication we started working on signing with Asher pretty early on. He does great with his signs and picks them up very quickly. He has even started to combine his signs.
Now that I've gotten everyone up to date on Asher's challenges let me tell you a little bit about what a joy he is. He is a happy almost two year old with a great little personality. He laughs, cries, throws fits and gets into whatever trouble he can. He can be mischievous and is very strong willed but is also super sweet. He's sharp as a tac and is a little ball of constant energy that I struggle to keep up with. Our days aren't filled with sadness or dread. This is our normal and even though it can be challenging at times I feel so lucky and blessed to have such a wonderful child. He fills our home and our hearts with so much love and laughter that I can't even express it in words. I can't imagine our lives without him and I feel so grateful that he made it through those touch and go first days in the NICU.
Right now Asher has therapy four days a week. He has physical therapy twice a week, feeding/speech therapy once a week and education therapy once a week. In physical therapy we're working on - walking, standing, and squatting to pick up toys. Education Therapy is all about play. We look at puzzles, play with toys, read books and all the while incorporate words and speech. I have to say that I am very happy with all his therapists but this hasn't always been the case.
We are currently on our third feeding therapist and I feel so lucky that we have finally been connected with such a great therapist who actually knows what she's doing and is familiar with feeding issues in cp children. She is also an amazing speech therapist. We had therapy with her today which was probably our fifth session. She doesn't man-handle Asher or make him uncomfortable but helps by suggesting things to try and by listening to him speak and watching him eat. After our negative experience with Children's Hospital feeding clinic this has been a welcome change. The main issues Asher has with feeding are that he doesn't chew on his molars but closer to the front of his mouth, he wants to shove all his food in his mouth at once and will chew on an item for what seems like forever. Because of the weakness in his muscles he also tires out quickly so it's hard to get him to eat enough quantity. His weight has been an issue ever since he stopped getting breast milk through a bottle when he was around 13 mos.
Asher is behind on both his language and speech but luckily it doesn't look like he is cognitively delayed. Some days can be really frustrating for the both of us. He knows what he wants and can't express it and I can't understand what he wants. I am so eager for the day that he can tell me what he needs or wants. I have had a few people say to me that when he does start speaking/walking I'm going to wonder why I wanted it so badly but let me just say that none of these people have children with cp. I can't wait for those milestones!
So let me just say that this whole process of picking a gait trainer is driving me crazy! To make the whole thing even more confusing Asher's physical therapist dropped off a posterior roller walker yesterday for me to try as well. We're trying to decide between the walker, the rifton pacer and the snugseat gator. The problem is that they each have features I like and features I don't like. We really want to make the right decision because once you are approved for a piece of equipment like this it's hard to get another one approved by insurance for up to five years.
Now that Asher is up and walking we are also noticing that his left leg is turning inward at the hip. His therapist has tried taping his leg with kineseo tape to see if it will encourage him to keep it facing out but so far it isn't working. We may need to look into derotation straps or a dmo down the road. Both of these will help to keep the leg in the correct position.
The much bigger issue I'm dealing with is trying to get Asher interested in actually using the equipment. Almost as soon as I have him strapped in he's signing "all done" to me. He is able to get around so much more quickly by crawling that walking just seems like a hassle to him at this point. I try to put him in a gait trainer at least twice a day but I don't want to make it a negative experience and turn him off to the whole thing. I try to encourage him with snacks, toys, whatever it takes at this point. It's so exciting to see him up and walking. I can't wait until the day he can do it all by himself but I know we have quite a ways to go. I'm so proud of him. The things that come naturally to a lot of kids are such enormous milestones for kids who have cp. I feel so blessed that he's doing so well.
You had a big pirate themed party this year.
You've had a long year and you deserved to have fun at your 1st B-Day party. Unfortunately, it did not happen that way. You absolutely did not like all these new people in your environment. I think you spent most of the party either crying or asleep because of all the commotion.
We love you soooo much and can't wait until you get to have another party (hopefully one you actually enjoy).
Around the time Asher was eight months old he had to have surgery to repair a hydrocele. This issue can be hard to resolve on its own in children who have shunts due to the area where the shunt drains.
When Asher was just over a year old we took him to have allergy testing and discovered that he's severely allergic to milk and egg. This was prompted by a couple of adverse reactions to milk products. We were sent home with a prescription for epi-pens and told to come back for testing when he's three. His allergy issues have only added to the difficulty of getting him to gain weight.
When Asher was around seven months old I took him to get his vision tested. We were told due to Asher's brain bleed and other complications he should have routine screening of both his vision and hearing. I had both tested when he was around seven months old. When I went to get his hearing screened I was a nervous wreck. I was so worried that this was going to be one more problem that we were going to discover. Thankfully he passed with flying colors. Shortly after he had an appointment to get his vision tested and I wasn't worried at all. I saw him everyday I hadn't noticed anything out of the ordinary. When I was told that he had strabismus I was really surprised. I had looked at this beautiful baby everyday for the last seven months and hadn't noticed any crossing. I guess love really is blind because when I went back and looked at his pictures it was very obvious. His strabismus was caused by a damaged nerve behind his eye due to the hydrocephalus. We initially tried patching his good eye to see if this would encourage the weak eye to strengthen but realized pretty quickly that surgery would be necessary.
This surgery to date has been the most difficult as far as recovery. I had to keep him from rubbing his eye and because of the botox he was given at the time of surgery he was unable to open the eye. It took over a month for his eye to get back to somewhat normal. There are still times that I feel like he drifts but his Dr has assured me repeatedly that everything looks great.
Around the time Asher was two months old he was screened by our county to see what services he needed through Early Intervention. He started physical therapy shortly there after. At first Asher had physical therapy twice a month. Those first therapy sessions were very difficult because Asher tended to be a normal two month old who wanted to just be held and loved on and not messed with. A few months down the road Asher's pt was increased to once a week and he also started occupational therapy to address the tightness in his right hand and also feeding issues. Asher was making progress in his development. He was able to roll over in the normal developmental range and also was able to sit up with assistance. He was a little late crawling and could only army crawl fro quite a while. Eventually he could hands and knee crawl but that came quite a while later.
We were ecstatic and relieved to finally get Asher home. At this point, his care was the same as any other 5 week old baby. The only exception was the constant worry about his future and a few minor issues. He had a right thumb abduction and had to wear a neoprene splint (he started wearing this in the NICU on the advice of pediatric occupational therapist) and he also had torticollis (a problem where he tilted he head back).
Asher seemed to thrive with being in a loving home and loved being around his older brother Parker. There were still obstacles we faced: he didn't eat as much as he should have, his sleeping patterns were inconsistent with sleeping only in 30 minute increments (even through the night!).
We found out that Asher had acid reflux and was put on prevacid to help control this.
Asher continued to be monitored closely by his Neurologist and Neurosurgeon, and had several EEGs, MRIs, CT Scans to check for siezures and ???(it's been a while...)
A lot of what happened in the NICU is a little fuzzy. It was by far the most emotional time of mine and my husband's lives. It felt like we were living a nightmare that we couldn't wake up from. How could our beautiful baby be going through all this? There is no way to explain to someone who hasn't gone through a similar experience what it's like. For a while everyday was filled with more bad news and set backs. Days turned into weeks in the NICU. After what seemed like forever things started to look more hopeful. Asher was eventually able to drink breast milk through a bottle but still struggled to eat a good amount in an appropriate amount of time. I made it a point to be at the NICU as much as possible. I would get there early in the morning and stay as late as possible. I wanted to be there for every feeding and near the end of the his stay I roomed in so I could even do all his night feedings as well. The nurses did a great job but they had several babies to care for and I could devote all my time to Asher. I pushed for a longer period to try and feed him with the bottle and he made a lot of progress. We were trying to avoid needing a g-tube and luckily we were able to.
One thing we couldn't avoid was Asher needing a vp shunt. The blood in his brain couldn't drain and after several unsuccessful lumbar punctures, not only in an attempt to drain some fluid but also to check for infections, it was decided he would need the surgery. He had hydrocephalus due to the fluid trapped in his head and we did not want his brain to swell and cause more damage. At around 4 1/2 wks old Asher had the surgery. The surgery involves making an incision behind the ear and one in the belly. A small hole is drilled in the skull and a thin tube is put into a ventricle in the brain. Another tube is placed under the skin behind the ear and goes down the side of the neck, down the chest and into the abdomen cavity where the fluid empties and is absorbed by the body. In Asher's case the shunt was put on the right side on his head and the doctor put enough coiled extra tubing to grow as he grows. It was a scary experience and we had no idea what to expect. We had no idea what the shunt would look like and it was so hard to see our sweet baby with a large lump on his head and incision marks in two spots on his little body. We were told to look out for signs of both shunt infection and malfunction. Both include fever, vomiting, lethargy, and possible banging of the head.
Luckily Asher's issues with his glucose resolved on its own as did his clotting issues. The doctors never figured out what was the cause of those problems. Three days after the surgery Asher was released from the hospital with a little help from a very persistent mom. After five long weeks of being in the NICU I was ready to bring my baby home and give him the loving nurturing environment he needed and deserved.
Walking into the larger NICU that Asher was transferred to was very overwhelming. It seemed like such a medical sterile environment and walking past the newborn nursery to get into the NICU was almost physically painful. To see all the happy families smiling and pointing at their new "healthy" babies was very difficult. The nurses and doctors were for the most part all very helpful and supportive.
The first night we spoke with a neurologist that explained to us that Asher had a grade IV bleed on the right side of his brain and a grade II bleed on the left side. He explained that bleeds are graded from I to IV with IV being the most severe. He did not give us false hope and made it clear that Asher would have lasting effects. It was explained to us that they usually see grade IV bleeds in severely premature infants and that it was surprising that Asher being a good weight at birth (5lbs.11oz.) and being basically full term was having these issues. The term cerebral palsy was mentioned very early on in Asher's NICU stay and we were basically told he would have some form of cp it was just too difficult to determine how severe it would be. Neither of us knew anyone with cerebral palsy and the thought seemed very frightening and overwhelming Because of the bleed in Asher's brain there was also a concern that he would have a hard time draining the blood and we were told that he may require a vp shunt.
Asher was still having a difficult time with his glucose level and his blood was having a hard time clotting. He needed two platelet transfusions. The doctor's had no idea what had caused the seizures, the brain bleed, the low glucose or the clotting problems. He was tested for everything imaginable and I mean everything. It all came back normal. Because of the seizures Asher was but on an anti-seizure medicine with made him very sleepy. He wasn't able to breast feed and couldn't even take a bottle. He had a feeding tube that went down his nose and was hooked up to tons of machines and drips. I was so scared to hold him or change his diapers but the NICU nurses did a great job getting me familiar with how to handle Asher's care. I was able to change him, hold him and down the road I was able to try to bottle and breast feed him. Asher always had a hard time eating even through the feeding tube. When we first went to the NICU I was thinking we'd be there a week tops but as the nurses explained to me the NICU is like a roller coaster, there a lot of ups and downs.
While we were still wrapped up in the high of holding our brand new beautiful baby, the NICU nurses needed to take him away to do a standard glucose test. Asher's glucose did not even register on the test and he was quickly admitted to the NICU to be put on a glucose drip. Within 15 to 30 minutes, Asher began showing signs of other problems. He was having trouble breathing and needed oxygen. The first time I was able to hold him in the NICU he stopped breathing.
During the first night, the neonatologist informed us that Asher had a couple of mini-seizures. They needed our consent to do an ultrasound on Asher's head to look for the reason behind the seizures.
The results came back from the test and we were told that Asher had a "brain bleed". At this point we didn't know the severity or the consequence of brain bleeds. Our minds were racing not knowing what to do or what all this meant.
We were also informed that the hospital was not equipped to handle cases like this and Asher needed to be transferred to a different area hospital (St. Mary's in Richmond).
The morning on the day I had Asher felt different. I felt like I was having sporadic contractions but I just chalked it up to Braxton Hicks since I was only 36 wks pregnant. I already had a scheduled appointment with my obgyn for my weekly ultrasound and non-stress testing. I told her that I felt like I was having contractions but she brushed it off. After failing the ultrasound because Asher wasn't taking practice breaths and failing the non-stress test because his heart rate had no variation I was admitted to the hospital for continued testing.
After being monitored for what seemed like quite a while it was decided that I needed to be induced. Before the pitocin could even be started my water broke and there was meconium in my fluid. Asher's heartbeat went from no variation to dropping. He was in distress and I could only lay at an uncomfortable angle on my right side for his heartbeat to even out. I was hoping for natural childbirth but because I couldn't get up and move during contractions I decided to have an epidural. Asher continued to be in distress and finally the doctor told me that we needed to do an emergency c-section. I asked him to check to see how far along I was and after finding I was stretchable to 10cm I was able to get Asher out in two pushes. He came out pink and crying and I was so happy to finally have my beautiful baby boy in my arms.
After three long years of trying we finally received great news...You're Pregnant! Besides constant nausea and hypertension my pregnancy was fairly uneventful. Because of the hypertension I went to the OBGYN weekly during my third trimester for ultrasounds and non-stress testing. I was due to be induced at 37 wks due to the hypertension.
I'm creating this blog for friends and family or anyone else interested in following Asher through this journey. As I'm starting this blog Asher is almost two years old. He was born in June of 2009. I will be posting quite a bit to get caught up to where we currently are in this journey.