First Time to Costco

We just back from Hawaii a little over a week ago and I am definitely going to blog about the trip and put up some great pictures but for now, I am trying to back into the habit of posting about the special day-to-day stuff.

So here is what I can say about Mr. Paxson lately, he is a total 2 year old now but not in the 'terrible' way. Mostly he just wants to go go go and do something fun and new every second. Which is really awesome and gives us high hopes for his cognitive development. On the flip side it is exhausting because he cant move himself so he constantly wants us playing, bouncing, jiggling, dancing and anything that keeps him moving. Here are some of his favorite things to do lately:

- Still loves stories and flashcards - we just recently got him some number flash cards and he is into those too
- Being outside and going for walks - he cant get enough of the new B.O.B double stroller we got (pictures to come)
- Tickling, dancing and any manual playing
- any form of attention, just don't ignore him
- eating, we are reintroducing solids and he is really excited about it
- Cartoons or Kid shows but only for about 15-20 min before he is bored
- Therapy, he really enjoys his PT but I think partly because he is getting so much hands on attention
- Parties, he likes groups of people especially when everyone is laughing

Here is what happens when you are not doing the above things with him, say for example Margaux needs to be fed or laundry needs to be done, etc... He yells at us which is kind of a fake cry / whining moan like "meh meh meh"

So because of all this and that fact that brain plasticity is really improved with new experience and variety, I have been trying to get him out of the house more. He loved it in Hawaii because we were always doing something and outside alot but we just cant maintain that level of activity with the day-to-day responsibilities of being home. Plus I am back to work now working 7am-2pm Mon-Thurs.

Anyway, when I got home yesterday Pax was starting to get antsy and I had all this running around to do so I decided to take him to Costco with me because I thought he would really like it. The tricky thing is its hard to take Pax shopping when there is just one of us because we have never known what to do with him since you cant push a stroller and a shopping cart at the same time and he is too heavy to carry the whole time. So for this excursion I decided that I would try putting him in the shopping cart and just stuffing a coat around him to keep him upright. So when we got there I was amazed at how well he fit in the shopping cart and he was really excited too, he especially liked the part where we walked through the parking lot because all the snow and ice made for a really bumpy ride in the cart which Pax thought was super fun. Long story short the shopping trip was a success and I am just so excited to know that he can sit pretty well in a cart - which opens up a whole new bundle of activities for us.

This might seem pretty unexciting to parents that don't face these issues, but I cant explain what a cool thing this was for us.

I attached a couple pis just share his cuteness - one is his new 'Stander' and the other is him practicing 'side sitting' in therapy

Pure Madness

things have just been crazy lately. We are still trying to move and have finished most of the home improvements we wanted to do before we moved in, and of course we were doing it all ourselves. Mostly cosmetic like new trim, paint, carpet and we are converting an extra room into a walk-in closet / laundry room and Robert just finished rewiring the electrical to support the dryer. I must say, I was pretty impressed that he was able to figure that out, and he was too. We've slowly moved some stuff in and we got our new TV setup along with internet and phone. Its just been really difficult because since the holidays, we've only had a couple hours a night to do anything by the time Robert gets home from work and then we have to get the kiddo's back to our old house to do the bedtime thing. But this weekend we are supposed be doing a big push and getting all our big furniture over there so we will start sleeping there this weekend which is really exciting.

These kids have been a handful. Margaux is about as easy as an infant can be, but she still needs to nurse and I feel like she doesnt get as much attention as she should because so much of my energy is focused on Paxson. Paxson is doing pretty good, he got his mickey button put in last weekend to replace the big feeding tube sticking out of his stomach which is awesome because it works really good and we aren't worried about where to tuck his tube all the time. At the same as that procedure we did another endoscopy to check his tummy and esophagus. Both looked good which means his allergies are all cleared up and we can start introdcuing solids again, we'll probably start with bannanas and I hope he likes it!

Lately we've been struggling with a new type of siezure. His kissy face is almost completely controlled with his new meds and we had a brief couple weeks were everything was perfect, he was so happy, no seizures, sleeping great. but lately something is going on that is affecting his sleep. His siezures have always been worse when he is tired so he's had challenges falling alseep and if he doesnt sleep it just gets worse, so its kind of a vicious cycle. Lately his body had been getting really stiff for approx 10sec and he just screams, then it passes and about 15 sec later is happens again and the only thing we can do it cuddle him really tight which seems to make them pass quicker but it is very time intensive and its hard to leave Margaux alone for 30-45 min while I try to get Pax to take a nap which sometime works and sometimes doesnt. Mostly its tough because it is so hardbreaking, but we are tweaking his med combination and hopefully we will pass through this soon. The one sure thing with Paxson is that he's always changing and as soon as we thing we have something figured out, its something different.

On a positive note, he is doing awesome right now and he is sitting in his beanbag and bicycle kicking like crazy which is the cutest thing because he gets really excited and proud that he can move his body.

With everything going on his manual ABR has been pretty much nil, but I'm trying to do even get a few minutes here and there so I dont forget everything completely. We are planning on going to our next Satellite in May or June but we haven't decided which location yet. We are still using the machine almost every night and the most recent exercise we were focusing on was the Lumbar. and I'm very excited to report that his PT recently said that his lumbar was getting stronger and she was seeing improvement in his core for sitting... I was so happy because we didnt even tell her about the machine exercise and it is always nice to have that validation.

I'm still on maternity leave and am planning to return to work at the end of Feb. working 3/4 time. Before that we have planned a 2 week vacation in Hawaii and its funny because I think I am most excited about just having Robert around for 2 weeks with no house stuff where we can just focus on the kids. We have some other family going over at the same time so that should be fun - we'll post pics!

Busy Family Times

picture updates from Nov-Dec, because we've been so busy most of these are just dumped from our phone's and blackberry's take horrible pictures, when I have time to download our camera photo's I'll but up some better ones.



So here's whats new:
Marguax Julianne Linquist was born Nov. 24, 2009
Paxson turned 2 years old Dec. 3rd - I cant believe it!
We bought a house - not yet moved in though
all sorts of holiday stuff

Overall Paxson is doing awesome!!! we had a rough patch right before Margaux was born, thanksgiving week. Paxson's siezure were getting really bad and preventing him from sleeping which just made things worse. But we have tweaked his meds and this is the best his siezures have ever been and we're so excited and Paxson has been happier than ever and sleeping great.

He is adjusting well to his little sister, he thinks its funny when she cries which cracks us up. the toughest part has been that since I had a c-section I am not allowed to carry paxson for 6 weeks, so we have basically had to have someone helping us out all the time. Between Paxson's amazing caregiver, Lorena and our great family, things have worked. Needless to say, Paxson has not been starved for attention. and Margaux has been about as easy as baby's can be so that has really helped. She eats all the time though, but she's nursing well and we are thankful for that.

so even though we had some tough times this fall, things are looking really good now and we are happy that this will be our first holiday season with Paxson that we didnt end up in the hospital (knock on wood) I am excited about continuing my recovery so i can start being more hands on with Paxson and his therapy. Also he is getting his g-tube replace with the mickey button on Jan. 8th and we cant wait. His tube feeding is going so well and he is gaining weight and doing really well. There is still some vomitting but we're pretty used to it by now, i think most of it is triggered by his sensitive gag reflex so we just clean it up and if its not interferring with his weight gain, we're ok with it.

I will have to post more about the new house later. The negotiations were super stressful right before Margaux was born. But now we are just doing some improvements before we move in and we are excited about the new home and I think it will be really good for Pax and Margaux. It has a great flat yard and is close to all the trails and parks that Pax loves and its only a 15 min walk from my mom's house. we are planning to be all moved in by the end of Jan.

I'll be home from work through the end of Feb and after that I think Robert might take a couple months off when I go back to work. We have alot to figure out, but we are just so happy now and really enjoying our family during the holidays.

Merry Christmas and Happy New Year to you!

Home from the Hospital

From Drop Box

Paxson right before discharge.

We are happy to be home today. Friday morning Paxson went into the hospital for another endoscope and g-tube placement. The procedure really went well. He had a bit of a tough time in his first day of recovery because his siezure med schedule was disrupted by the procedure which resulted in an increase in his myclonic seizures aka "shakes" which we rarely see at home and they seems to scare him and be alot more uncomfortable that his normal complex partials, aka "kissy face".
Once we got his meds back on track and with the help of little morphine and cartoons, he was doing great.

Here is a picture of his new tube. in January this will be replaced by a lower-profile "button" style, which means now awkward tube hanging out.

From Drop Box

For those of you that have been following our struggle do to this procedure, you know it was a tough decision for us. The really really good thing is that we were able to have the procedure done with out having a nissen/fundoplication operation done. The main reason for this is that is was finally determined that Paxson's feeding issue were not primarily related to his neurologic issues but rather his recent diagnosis of severe EE which is an internal allergic reaction.
We first had Pax allergy tested in May after which we had to eliminate approx 70% of his diet. This last week we just through another round of allergy testing. To prepare for this testing I brought samples of all the foods that Paxson is still eating and we decided to retest some of the earlier foods through patch-testing. Patch-testing versus Prick testing is better associate with Esophageal reactions. So this time we found out that he shouldn't be eating chicken or sweet potatoes, 2 of his favorite things. We also found that he had a most severe reaction to Apples and Prunes, that left blisters on his back for 4 days after the patch was removed, 'Poor little guy'. He also tested positive for a lot of other fruits, peaches, pears, strawberries and raspberries. This was pretty disappointing because all this is just in addition to everything we found in May. The good news is there were some veggies and proteins that I thought he might be allergic to but he tested negative to: white fish, salmon, pork, turkey, green bean, pea, carrot, avocado, and banana.

So we continue to work through his allergies and feeding issues with: food elimination, feeding therapy, meds for his esophagus, and now we will have the 'tube' to help with supplemental feedings. Our hope is that slowly meal-time will not be such a dramatic event for Paxson and that he will actually start enjoying eating.

All in all we are happy with our decision and Paxson is doing great.

From Drop Box

From Drop Box

I am so behind in my blog updates that I dont know where to start. Acutally that is mostly the reason why I am so behind, everytime I wanted to do a simple update I felt that wouldnt suffice because I had to tell the "whole-story". So thats not going to happen, but here is a brief update of the summer.

Summer has been awesome and busy - I will try to post some pics of the fun stuff

We went to San Diego/Oceanside in Aug for ABR - our shortest session ever. We got new exercises, our Binder to track progress, and we met some really great 'new' families. We are getting good time in with the ABR machine and Lorena is doing good with Manual exercises during the day. I gave her 2 out of 4 to focus on while we're at work. Unfortunately but not unexpectedly I'm not doing any good on getting ABR in and Robert hasnt done any. It is really lately because of this enourmous belly I am carrying around, and the 2 exercises I am focusing on (mastoeid Process and C7) require Pax do be in my lap.

So if we're not doing enough ABR, what has Paxson been doing? Well we continue to revolve our days around eating - here's the update. After Paxson's endoscopy we foung out he has serve Eosinophilic Esophagitis which is basically an allergic reaction in the esophagus. Kind of like having the excesma on the inside of your throat. It causes:severe heartburn, difficulty swallowing, food impaction in the esophagus, nausea, vomiting and weight loss. All the things we've been dealing with. So we have started him a medicine to coat his esophagus twice a day, but we wont be able to deal how well it is working until we do another scope. And, we finally have another appointment with the allergist tomorrow (we only had to wait 3 months. This will be really important because I am going to bring all the foods he is currently eating to test and see if we need to eliminate anymore. The tricky thing is once you have kids with lots of allergies it gets harder and less likely that you will pinpoint all of them. So we are still kinda considering a g-tube just because the feedings are still so painful and/or frustrating for him.

So here's some good new. Paxson is super vocal. I think he sounds like chewbacca but whatever it sounds like its a good thing that he is exploring his vocal cords. In addition to that he is defnitely showing strong preferences for certain toys and activities. He actually gets fussy and upset when he is bored which is cool because he is really asking for a lot of stimulation and his favorite thing is still books and flashcards. Plus he loves being outside.

Ok I think that kind of gets us caught up. I'll try not to fall so behind again.

Paxson Plays with Elmo

Drum Roll Please......

I am happy to offically announce on Paxson's Blog that he will become a BIG BROTHER this year.

Robert and I are expecting our second baby toward the end of November and we found out it is a BABY GIRL!!!. So far the pregnancy has been good. I've just been a little more tired and I have some serious Pregnancy Brain going on. My pregnancy with Paxson was perfect and uneventful so we are expecting the same this go around. The one exception being that we will be having a planned c-section. Before deciding to start 'trying' for a baby, Robert and I put alot of thought into whether growing our family would be a good idea for Paxson or not. The obvious downside being that he will have to share our time and attention compared to now where he gets 2000% of it. However, ultimately we decided that sibling(s) would be a wonderful life experience for Paxson and add to his quality of life. We dont know how we are going to manage it all yet. We feel like we have our hands full with Paxson, his therapy and medical issues, and both of us working full time but we'll figure it out and we are so over the moon about our growing family.

I'm interested if anyone has any experience with or stories to share regarding have a special needs (2yr old) and a baby in the same house.... the logistics of it.

also, we are playing with ideas for names.

I like Margot or Margo (i havent decided on the spelling yet, Robert doesn't like it)... so tell me what you think. or other ideas.

to operate or not to operate...

I know this topic of feeding tubes is getting a little old. At least for me it is and more emotionally draining than I realized. Last wednesday we had an appointment with the surgeon to discuss getting Paxson's g-tube and Nissen surgery. Roberts meeting at work went late so he wasnt there. I can officially say this was probably the most difficult appointment I have had for Paxson, minus his initial MRI reading. I was trying really hard to concentrate on everything the doc was saying about this % chance of blockage, this % of leakage, this % chance of increased vomitting and retching, etc. etc. He also said that they would keep Paxson in the hospital for 7-10 day for recovery. I think thats when he lost me. The pediatrician had expected 3-4 days for recovery and I think that is normal, the surgeon just wanted to keep a close eye on Pax because of his condition I guess. But thats when it really all became very 'real' and 'serious' for me. Then I couldnt stop thinking about them cutting into my poor little baby and what if there where complications and what if things ended up worse than they are now? I am normally a very analytical person, but all that flew out the window. I was just nodding and staring, "where were all my intelligent probbing questions, I wondered?" So by the end of the appointment when we were discussing scheduling it was all I could do to hold back the tears and get out of there ASAP. I was supposed to call the following day, last thursday, to give them the go ahead to schedule in which case we would have been doing the surgery this thursday. Yeah, I didnt make that call. Instead I decided to meet with his nutritionalist and see if there are other creative ideas for weight gain. Maybe we will get an NG tube placed for a couple weeks just to keep him from wasting away. But the poor little guy, all his clothes that used to fit are falling off his body. We were at the lakehouse this weekend and he had some old summer clothes out there from last year and he fit perfectly in his 6-12 month old swim trunks. It made me sad because he is not only not gaining weight but I'm watching him get skinnier and I see more bones sticking out. I'm giving myself this week to figure out the master plan.

Aside from all that our 4th of July weekend was great. It was 85 degress and super hot but perfect for the jet ski, tubbing and swimming in the lake. I found out Paxson isnt really a fan of the heat or maybe all the people around. I think it makes him lazy and tired but he did get a cute a tan. I'll try to round up some pics.

A Future of Wide Hallways and No Stairs

This is what has been our mind a lot lately. Where are we going to live as Paxson gets older? Currently we live in a great house in downtown anchorage; the location is fabulous and great for Paxson, the best schools and parks everywhere. It is really easy to just walk right out the front door with him and go wherever we want. But there are some downsides to the house. Before I get into that let me explain why this matters.
When Paxson recovered from his encephalitis at about 5 weeks old and the docs saw his MRI they said that he wouldn’t walk or talk (of course with the disclaimer that it’s not certain, blah blah blah) but they were pretty clear on their message. I can honestly say I don’t believe that at all. Well at least about the talking part and we're not giving up on the walking but as I learn more I am starting to understand that whatever mobility Paxson develops and if can walk at some point it is mostly likely not going to be 'easy' for him. We recently saw a CP specialist from Seattle Children’s Hospital and he talked to us about the classification system they use for CP kids essentially is a 1-5 scale with 1 being the best where the child has pretty much full mobility. 5 being the worst where the child has little to no control over their body including head control. The usually don’t apply before age 2 but this guy said that if he had to place Paxson he thinks he would be a 4. Well of course that’s not what I want to hear and I'm thinking "Seriously? That’s it" But I don’t really put too much stock in it so no worries but I was interested in his opinion. [On a side note he was very old school and didn’t really put much weight in alternative therapies so I didn’t even mention ABR.] Anyway he went on to say that through a lot of work and prayer (ok I added that one) Paxson could potentially move up to a category 3 which would still mean that he might be in a motor chair to get around (because it maybe more efficient super-slow difficult walking) but that he would be able to get himself in and out of it for transfers to the bathroom and furniture. Well honestly, my threshold is seriously changing because I find myself thinking wow that would great! So anyway that is my minimum level goal for Paxson.
So back to the issue of the house. It is a split-level (YUCK) which I'm convinced 70% of all Anchorage homes are. We have remodeled the downstairs which has 3 bedrooms 2 baths and kitchen and living area. My mom lives in the upstairs which has a master suite and amazing kitchen and living area. So far it’s been working out great but we know that ultimately Robert and I will outgrow the space or my mom will get sick of the close proximity. Either way we need a future plan. So we've been thinking about buying the whole house (which we can’t actually afford because downtown is expensive!) Or moving farther out into some kind of awesome ranch. Unfortunately there are not many big ranches available in Anchorage so we are also entertaining the idea of building at some point. This whole topic has really gotten me to thinking about what families with disabilities are supposed to do? Is everyone expected to just move into a ranch? I mentioned this to Paxson’s OT and she said that the house would accommodate an elevator (really?) I don’t really like that idea too much. We want Paxson to able to "run around" with any future siblings and my vision really didn’t involved children getting into an elevator to get to their play room.
That’s a summary of my thoughts for the last couple weeks. I am interested to hear what other families are doing about this. Also does anyone know if there are housing loans or grants available specifically for building disability accessible house or home modifications?


Just for fun, here is a pic Robert sent yesterday when he was in the waiting room for Paxson Gastric emptying study to take place. It came from his iPhone with the accompanying message: "sometimes I think people want to steal our baby..... Because he's so cute"

Fun Stuff Too

Just so everyone knows its not all doctors appointments and feeding issues, I'm posting a couple pictures from our camping trip last weekend. We went to montana creek and did some tent camping with cousings while Robert slayed the fish with his fly pole.

Feeding update (yuck)

Feeding----I must admit this is still the most frustrating part of parenting for us. Finding out about the allergies was a great piece of the puzzle for us. We did have to deal with a lot of guilt afterward because we would get really frustrated with Paxson for not eating his food when we knew he was capable and we could understand why he is was fighting us so much… come to find almost everything we were giving him was poison for his little body, ahhh. I was also really irritated because I had tried to get him allergy tested when he was 5-6 months old but the doctors told me it wasn’t possible to test on a baby so young and would not give me a referral. Come to find out from the allergist he should have been tested then. No point in harping on the past though, I’m just happy we know now. So I have eliminated all his allergens from his diet and then put him on the SCD specific carbohydrate diet. The funny thing about that is that the SCD is already insanely strict and because of his allergies Paxson still can’t eat a lot of the food on the diet. For example they substitute a lot of nut flours in recipes as well as egg and certain cheeses, all off limits for Pax. The biggest change coming from SCD is that we have eliminated all sugars from his diet and potatoes, which he wasn’t allergic to before. Also, we had to take him off of his hypoallergenic formula which had trace amounts of soy and milk. This was probably the hardest thing to give up because the formula was so fortified; now we have to ensure he is getting a very balanced diet with all his required nutrition… which I know he isn’t getting right now. But I just ordered some SCD compliant supplements which should help a lot. The other drag is that he doesn’t actually like drinking juice so he has completely quit latching onto his bottle so hydration has been a real struggle for us lately. All this leads back to the issue of getting a g-button or not. Robert is completely convinced that that is the way to go. I am still on the fence but at the same time I have been watching my little baby wasting away (losing weight) for the past few weeks and it sucks. On top of that feeding and bottle time is pretty miserable for the whole family. Paxson will do good with his solids if he is in the mood and only while is attention span lasts, aside from that it ends up in a battle of wills with Paxson winning most the battles. So we are meeting with our Pediatrician tomorrow to discuss a G tube placement. Our vision is that this would be temporary until we get his oral feeding and overall food aversions under control. I’ve included a picture of what one looks like for those that need a visual. THIS IS NOT PAXSON (just a good pic I found on the internet)

From Drop Box

It’s really not as scary as it sounds… or maybe we have just had a lot of time to adapt to the idea of it. I cant even explain how jealous I am of parents whose children eat without so much effort. The one kind of cool thing is that Paxson has actually started trying to push us away when we are feeding him which is great because he doesnt really use his arms so much. Of course it would be great to have him giving us hugs and not pushing us away... but we'll take what we can get right now! I'm just really looking forward to the day when we spend more time on therapy and less on food.

Seizure (kissy face) update

Seizures - - - are driving me crazy. Paxson is still on Keppra and we started him on Zonegran too almost 2 months ago. So my little guy is on two different seizure meds and honestly I haven’t noticed any difference. A lot of other moms have described their children’s seizure and medications as a rollercoaster ride. Sometimes the meds work and the seizures get better but then the side effects are too bad. Or the meds work for a while but then the child or the seizures out grow it. I understand that medicating seizures is a lot of trial and error but I am getting really frustrated because ever since we identified these complex partial seizures (Paxson’s kissy face) in November of 2008. We haven’t seen any improvement at all. I am not in principle against medications however I must say I’m not impressed with dumping all these meds into my baby twice a day for what appears to be no reason. Paxson’s neurologist has been out of the office but returned today so I am hoping to get a new plan of attack this week. My preference would be to take him off all the meds (slowly) and observe the seizures; if they appear worse we will know the meds were doing something. If there is no change, we can consider trying something different or just keeping him off for a while. The neurologist is adamant that we get seizures under control and he has explained that if we don’t there is a negative effect on his cognitive development because his learning is interrupted throughout the day. My concern is that the seizure medication could also be having a negative cognitive effect and if they are not controlling the seizures we just end up with two negatives. I’ll keep you all posted on what we find out

2nd ABR Satelitte

Our Trip to Oceanside went very well. We were lucky enough to have alot of family come along for the trip. Our first full day we went to the Wildlife Safari Park which was really fun and Paxson did really good. The next day he got sick with a fever and just overall yuckiness. We were worried that we were going to have a repeat of our last trip in Seattle and end up in the hospital. Instead we gave him some baby tylenol and cool rags on his head, lots of rest and fluids. This all worked and a day and a half later he was good as new. I was so excited because now I know it is possible for my baby to get sick and not end up in hospital. This would be exciting for a parent who has spent alot of time in hospitals.

Paxson really enjoyed the weather and we travelled with his Bingo chair converted to a stroller and he loved getting to go for long walks by the beach. He was actually getting fuss when he was stuck in the house for too long, which was neat to see.

ABR went really well. As always it was awesome to talk with the other moms and get all their insight. We also took Paxson's evaluation pictures and were able to compare those with his Montreal photos from last October. I am happy to report that we are seeing improvement in his hips and more independtant movement from his waist. When in a sitting position when we leaned Paxson to the side his whole body moved like a block, now he is actually bending from the waist. Also, when in a sitting position if we lean him back his legs dont fly up in the air. His head control has improved so much it is like night and day. Leonid reported that we really need to focus on Machine time as well as manual and that if we can add even an extra hour or two a day on the machine it will make great improvements toward independant sitting which is our big functional goal.

We got 4 new manual exercises:
Clavicular Groove - I am very excited about this one because the intent is to straighten his clavical so it is less like a 'V' shape. This will have the effect of better arm control too, at least bringing them down. The other cool thing about this exercises is we do it in what is called reverse guitar position where Paxson is on our lap wrapped around us. The closer he is to us and the more comfortable the more likely he is to cooperate and he can actually fall asleep in this position.

C7 - this is another good exercise that is working to lengthen the back of his neck. We do this one with him on our lap and its also a good position for him.

The other two exercises are very similar, Cheeks & Temple. Both are obviously done on the head and are accordian style. Paxson does not tolerate these nearly as well but my goal is to try to do 15-20 min at a time until he tolerates it better. We have never done well at getting much time in on any of the head exercises we've been assigned so I really want to do better on these. But already we've been spending alot more time on the other two.... ooops

Alot more has happened since our last post but I'm trying to tackle everything in bite size pieces.... more to come

Another Piece of the Puzzle

I am so excited because I feel like we finally had a breakthrough yesterday!!!
Paxson had his initial allergy testing appointment. There are two kinds of tests that they do 1st is a scratch test that looks for immediate allergic reactions, 2nd is a patch test that looks for delayed allergic reactions.
It is really interesting because apparently there are 2 different types or allergic reactions so it possible that you won’t have a delayed reaction but will have an immediate and vice versa. So we got the results back on Paxson’s immediate test and we wont find our the other test until Thursday. So here is what we learned already – Paxson is allergic to:
• Eggs
• Peanuts
• Garlic
• Beef
• Milk – all dairy
• Soy
• Rice
• Wheat
• Oats
• All other Nuts
• Sesame

… And worst of all our pets Denali (dog) and Max (cat)

It is a horrible but list but also really exciting because we believe all these food have been the cause of his horrible reflux/vomiting and problems eating. It’s really amazing that he has done as well as has so far. The timing of this test is great (although it could’ve happened sooner) because all the doctors have been talking about NG and G tube and tummy surgery to do a fundo-wrap. None of which we were too keen on. Now I finally feel like we have some control. I’ve tried different diet modifications before but seeing the list in its entirety, I never removed all the allergens at once. Everything is supposed to filter out of his system in about three weeks. Yesterday we picked up a new hypoallergenic formula that is non-dairy based and I was worried he wouldn’t like the flavor but once we added a little a honey he drank the whole bottle. I am really excited! Even though it sounds like he is allergic to everything under the sun, there is still a lot that he can eat. And not being allergic to corn and potatoes is a really good thing and he can have other meet/seafood proteins aside from beef; and he gets all his fruits and veggies so it will just mean so highly processed food which is best for everyone.

About the animals – these allergies didn’t have anything to do with his GI issues, but they are linked to his respiratory issues and specifically the fact that he is always snotty, sneezing, and congested. We are really really sad about the animals, but like Robert says “we love our baby more”

So that’s the big new for today. Please keep your fingers crossed that we don’t find allergies on Thursday.

Also, we are heading to Oceanside, California for next ABR Satellite this Friday. So I will keep everyone posted on that trip.

Paxson's new Chair

We ordered a chair for Paxson quite a while ago and it finally showed up when we got back from Washington. When it was delivered it was a little wierd and hard for me because this is Paxson first piece of "equipment" I actually started to choke up a little which is really stupid but Ive been kind of emotional lately. Fortunately I got over it really quick because Paxson LOVES his chair. We are really liking it too because it is easier for him to part of the conversation and for us to teach him about the things we are doing without having him held all the time. We're looking forward to incorporating it into our daily routine more. The other really cool thing is that is converts to a stroller and just in time for summer so we can do more outside while he is in good positioning!
Check out this happy guy

From Drop Box

what we've been up to

So much has been going on, i barely know where to start. So I left off with Paxson having all his vomitting issues. Well, none of the tests proved anything more insightful and eventually the vomitting the stopped. So we continued with our planned trip to Washington State for Shanda's wedding, a visit with my brothers & family, and a side trip to visit Roberts family. So we flew in late and the next morning Paxson woke up sick. He was really fussy and congested and not acting normal. We went to the nearest store to pick up some tylenol for him and other supplies. By late in the afternoon Paxsons breathing was getting very labored with bobbing head and heaving chest with some wheezing. He's never done anything like this before so we to him to the ER at Seattle Childrens Hospital which fortunately was very close to our hotel. Bad news is we ended up spending the next 4 days in-patient. They determined that he had some sort of respiratory virus and they treated him as a pre-asmatic. Good news is by the time they finally let us out Paxson was back to his normal happy self and he did great the rest of the trip. I've included some of the pics below.

Me & Pax with my Brother and his little girl Anjou

From Drop Box

My nephew Soren tattooing himself with comic book stickers

From Drop Box

Running out of Options

I follow a lot of others blogs that have been such a wealth of information for me and truly an inspiration. The other blogs are I read are so great because the moms are super creative, very clever and wonderful writers.... I, on the other hand - not so much. It because of this that I am starting to feel like my blog is more a record of our trials and tribulations than an accurate reflection of Paxson's journey with all the awesome and beautiful details. So I am really going to try and refocus this blog as soon as we get through our current issues. Ha Ha, I'm tricky because I am going to use the rest of this post to unload.
Paxson's vomiting has gotten worse- WAY WORSE. Basically like it was when we hospitalized in Dec. We've taken his to a different pediatrician and hospital for a second opinion. We are running the same tests. X-rays, upper GI study, and tomorrow we'll do an MRI. I've also been considering the Specific Carbohydrate Diet (SCD) but hadnt gotten around to actually trying it out which of course now I am kicking myself in the ass for. But I'm trying to introduce the principles now. Paxson is only taking pedialyte and my mom made up some homemade chicken soup (sans noodles) and I introduced some of that last night diluted with the pedialyte and I am happy to report that he held that down!
Of course the doctors are talking about a G-tube and Nissen surgery again. Which I really was/am reluctant to do. However there is another part of me that has failed to see my baby gain any weight and I'm starting to worry I might be acting like a fundamentalist Amish who declines necessary medical treatments for my child (no offense to our Amish friends)
So, I must admit we are warming up to the idea of a g-tube and Nissen. Of course we would continue diligently with Paxson's oral feeding and just use this to get some meat back on his bones and hopefully free up some time for other things in his day like playing and therapy.
We are supposed to be traveling to Seattle next week for a family trip and we were able to get an appointment with a GI specialist at the Children’s Hospital there - so hopefully we will be able to make the trip next Wednesday.
I still am very interested in changing and controlling his diet to manage the vomiting that way. So I'll continue down that path and if he improves we'll put off surgery, otherwise we can also utilize this diet in conjunction with the g-tube.
We also started him on Reglan which is supposed to increase the transit time of food out of the stomach. Anyone have any experience with this?

The good news I can share is that when Paxson is not actively vomiting he still very happy and sweet. Cooing and kicking around just a little more sleepy/lazy than before.

More to come...

Just a Little Venting

Ok, before I get going, I need to make it really clear that I absolutely adore my baby and he puts smiles on my face everyday. If I'm within a foot of him, I literally can’t stop kissing his face - which lucky for me he seems to like.

All that aside, I am getting so sick of getting puked on and spending literally hours a day feeding him. Just to end up cleaning it off him, myself, the couch... the floor
Needless to say we are still having feeding issues and it drives me crazy because we really can’t seem to find any rhyme or reason to it. Sometimes he holds down his food and eats really quickly. Other days we can barely seem to get anything into him. We thought we had a little mini breakthrough because Paxson normally doesn’t really take more than 2oz from him bottle at a time. But his new care provider came up with the idea of adding organic buckwheat honey and heating up the bottle a little and he really seemed to like it. He would eat 6 oz at a time - MAJOR BREAKTHROUGH. Unfortunately that lasted a few days and now he sometimes throws it up and sometimes doesn’t really seem interested at all. So here are the things that really driving us crazy: It’s the ups and downs, and I can’t figure out why I can’t figure it out. Secondly, we are back to sucking at all our other therapies because we sit there and try to put food in Paxson’s face all day - literally hours of time spent when we should be doing ABR and fun stuff.

So here's the immediate game plan. We are taking Paxson to a natural pathetic clinic on April 7th and we'll see if they have any ideas. Robert has suggested that we take him to GI specialist which I think is a great idea, so we just need to find him. Also, his pediatrician is exploring the option of increasing his prevacid (to decrease vomiting) and we also asked her to look into any pediatric appetite stimulants.

So hopefully we get some improvements soon and we won’t have to consider a G-tube and fundo surgery

Neurological Update

So we took Paxson to the neurologist yesterday. As I posted earlier, in Jan. we started him on Keppra an anti-seizure medication. Robert and I were pretty reluctant to do this because we were concerned about the side effects specifically that Pax would get all sleepy and grouchy like he was on the Phenobarbital. Funny thing is it never occurred to us that the medicine would get rid of the seizure. This is basically where we are at. Good news is we haven’t observed any side-effects. Bad news is he’s still having the seizures. They are still pretty minor - we still refer to them as his "kissy face” and they don’t bother him too much and they only last a few seconds. But the concern is that he is having them often enough that they are disrupting his day and could prevent optimal cognitive development. So the plan is that we are going to 'up' the Keppra dosage one more time and watch it for a few weeks. If there's been no improvement we will try some other drugs that we discussed yesterday... I hate the seizures drugs but my hope is that this will all temporary and eventually he will out grow the seizures. Our neurologist explained that right now is brain is growing and developing so much that it is really easy for these misfires to occur and expects that we will see all kinds of different neurological things over the next few years.
Another thing we recently observed is that it seemed liked Paxson’s "Shakes" were returning. He used to have these 'shakes' that are like a normal baby startle reflex all the time when he was little and they were very disturbing to him and it really prevented him from laying down or doing anything where he was held. So when we started to see them again, we were wondering what that was all about. We had seen these on prior EEGs and they didn’t register as seizures, so we asked the neurologist about them and he said he things they are likely myclonic (don’t know if I spelled that right or really what it means) I have to do some more research on that but I'll keep everyone posted.
One more thing about the appt., we told the doc. that it looks like Paxson is left-handed and he said that is actually a good thing because that means the right side of the brain is dominant... or something like that. Also when Paxson has his kissy face seizures his head always turns to the left. Apparently this is also a good thing because it means that his seizures are in an isolated area of the brain since they are presenting the same each time.

On another note....
Paxson’s new caregiver is still awesome and wonderful and she's been doing great with the ABR. Before we hired her, Robert and I were debating whether one of should quit our job. But yesterday I joked with him that as long as she is with us, that’s not an option because she does better that we would do! Its just so nice not to be worried him while we are at work and to get home and know that he's been doing really productive things all day. It takes the guilt away when we just want to cuddle and play with him instead of trying to do therapy every waking hour.

We have a pediatrician appt this afternoon and the big question is where Paxson’s weight is at. I'm not sure if I blogged about this but the last time we had him weighed was when we returned from California and he had lost 3oz over a 3 week period... and I was expecting a significant weight gain. So I'm really interested to see where we are today. I think I’m obsessive more over his weight than some of the other Moms I talk to, but I just can’t get it out of my head that he needs an excess of calories and nutrients to encourage brain growth and development. So for now, I'll keep obsessing and try to get him to quit vomiting...

Jess

Bathtime & Good News

 
 
 

So here is the most exciting that has happened in our Journey with Paxson in a long time. We recently decided to hire a new cargiver for Paxson. The prior girl was very nice and reliable, but we felt that Paxson needed a more stimulative environment. Someone that would be able to get him on a schedule and focus on therapy including ABR. So we began the process of searching for a new provider and I got some wonderful help and advice from an ABR Mom. After a long interview process and some great candidates we finally found a new provider for Paxson. I spent last friday with her training and teaching ABR and she started her regular schedule this monday. She is so wonderful, in the first three day she has already observed and commented on all Paxson's unique habits and personality traits. She is already doing one ABR excerise and engaging in other forms of 'therapy' Play all day. In addition to all this she has also been helping around the house. She describes herself as a compulsive clean freak and very hyper, needing to be busy all day. Its like a dream come true! We are so happy and she is such a blessing.

This has been so wonderful and it has taken some of the stress off Robert and I while we're at work. Also, we adjusted our work schedules so Robert goes into work at 9:30 am and I get off at 4:00, this way Paxson is only away from us 6hrs max mon-thurs.

I'm really happy things seem to working out so well!

Dumped

So I'm way behind in my posting and there is so much new info I wanted to get up here, especially with regard to our trip to ABR Satellite Clinic in Oceaside, CA. But until then, I had to get this newest issue up here.

We had a meeting with our PT on Monday at which I point we told her that we were not interested in using DAFO's (Dynamic Ankle-Foot Orthosis)these are rigid othodics and not supported by ABR. So, long story short, she told us she didnt think she was the right PT for us and we should find someone else. I was really surprised by this and told her that we still valued traditional PT, but that we didnt want to be so equipment focused. But ultimately it was just a matter of time before she wanted to put him in walkers and standers.

...Thats the story of how we got dumped by our PT. I am in the process of finding a new PT that is a better fit for us and Im sure it will all turn out for the best.

Paxson at the San Diego Zoo!

Paxson asleep at the wheel

From Drop Box

Here is a cute picture of paxson asleep at Auntie Wanda's. I have no idea how he feel asleep in that position. He is doing really well and growing good! we gained another 5oz. and 'Operation Make Paxson Chubby' is in full swing. We just order these powder mixes that we add to his bottle that makes an 8oz bottle worth 600 calories. They're called ScandiShakes - and we have to give a big thanks to Melanie and Daniel for pointing them out.

Well we are getting ready for next ABR trip, we leave tomorrow night at mid-night and we have so much to do to get ready. And to top it off, I'm not even in town, I'm in Fairbanks on a business trip heading home tomorrow with just enough to pack up my family and head to California. I can never quite figure out how our family manages to be so busy, but I'm keeping my eye on the prize - which is 1.) showing Paxson a real-live elephant at the San Diego Zoo and 2.) picking up our new ABR machine!!!

gotta run.

Update w/newer pics

So we had a good week. Paxson has not been throwing up, he's been taking the bottle even better. He had alot of fun hanging out with everyone at the superbowl party yesterday. And Robert swears that he taught paxson to scratch his nose this weekend... I'll believe that one when I see it, but the prospect is exciting!

Enjoy the pics


Ha Ha HA, this picture cracks me up... Paxson always looks like a deer caught in head lights when you take a picture straight on.

From Drop Box

Paxson talking to my best friend Shanda.... who's ready to pop baby Charlotte any day now

From Drop Box

Paxson cuddling with his Auntie Brittany

From Drop Box

Picture Update

Inside Looking Out

From Drop Box

Curious Kiddo

From Drop Box

My Messy Eater

From Drop Box

My Angel

From Drop Box

12oz chubbier

!!!GOOD NEWS - Paxson gained 12oz in two weeks!!!
So if you remember the reason Paxson was hospitalized last month was because he was vomitting, dehydrated and losing weight. Since we got him home we've been on a mission to get him to gain weight and if we can do this naturally we'll be able to avoid getting him a feeding tube and Nissen Surgery. So we have been having him weighed every week.
Well last Monday (Jan. 12) the nurse said that we had gained 7oz in the last week and we couldnt believe. There was some concern that the scale could have been off, so I was really hoping this week that we wouldnt have backtracked. Well she came over today and said that not only did he keep the 7oz on, but he had gained another 50z in this week. Its so crazy, but we are really happy.

Other news, We bit the bullet and started Paxson on an anti-siezure medication called Keppra last week (Thursday) He is starting on a super-low dose and we will be increasing this incrementally. Next increase is Thursday. So far so good. He's still having his little siezures but we havent noticed any side effects, and thats are biggest concern.

Glasses

so these aren't the newest picture but I wanted to get some up there with Paxson's glasses. I'll try and post more later

Update

I know I've been slacking on this blog, which isn’t a good way to start the New Year. I really need to get a picture of Paxson with his glasses up here because they are so cute! Over the holidays everyone said he looked like Ralphy from 'A Christmas Story'. And I am very happy to report that we think we are seeing a difference. His Strabismus (wandering eyes) seems to have decreased significantly and he seems better able to focus on things and even more interested in his environment. Also he is not arching his neck/back so much which makes sense because the orthamologist said his eyes were best aligned when he was looking upward, so this was the easiest way for him to interpret his world. All of this is exciting and we take him back for his next vision checkup on the 26th, so it will be interesting to hear the professional opinion.

Seizure activity is still there. We got a prescription for Keppra, but we haven’t started him on it. Robert and I are really hesitant to medicate Paxson so we're really sitting on the fence for this decision. But we're doing our research and we'll have to decide something soon.

Feeding.... Ahhh, this is the most stressful aspect of my life right now. The frustrating part is that Paxson is capable of eating and he has done an amazing job of not aspiration his food/fluids. However, he doesn’t really like his bottle; he only eats on average 2oz at a time, so it is a constant struggle to keep him hydrated. On top of that he has progressively been getting lower and lower on the weight curve. At around 6 months old he was in the 50% for weight and 75% for height. He is now in the 10-15% for weight and still 75% for height. So after we left the hospital we had the goal of getting him back up to the 50% range, in order to do this we were prescribed Nutrin which is a high-calorie formula supplement (similar to Ensure). The idea was that if we could get 3 (8.5oz) cans in him a day he would stay appropriately hydrated and gain weight. Ideally he would drink this formula in addition to the solids he was already eating well. So, this isn’t really panning out. Since he doesn’t take the fluids from the bottle we end up mixing most of it with rice cereal and spooning it in. So the Nutrin formula has taken the place of all the various solids he used to eat. And he doesn’t like this as much. He would totally prefer to live off Bananas and Sweet Potatoes. So basically Robert and I are spending every waking minute (that we're not at work) trying get him to eat which annoys Paxson, stresses up out, and takes away from Therapy and play time. Because of this, Robert and I are seriously considering putting in a G-button to allow for tube feeding directly into his stomach. If we do decide to go this route, we will keep Paxson eating his solids and use this primarily for fluid intake. The G-button can be removed at any time so hopefully we would just use this for a year or two while he is gaining cup drinking skills and then we will have it removed.

So this is a long update. The next one will be more fun!

Christmas 2008

“And the Grinch, with his Grinch-feet ice cold in the snow,
stood puzzling and puzzling, how could it be so? It came without ribbons.
It came without tags. It came without packages, boxes or bags.
And he puzzled and puzzled 'till his puzzler was sore.
Then the Grinch thought of something he hadn't before.
What if Christmas, he thought, doesn't come from a store.
What if Christmas, perhaps, means a little bit more.”

Siezures - YUCK!

So Paxson had his EEG today. We still have to have a thorough follow-up appt with his neurologist. But it turns out his "kissy face" is in fact siezures. Haha, i feel kind of stupid for calling them his kissy face and thinking it was cute, but whatever, it is what it is and its all a part of Paxson. So we'll probably still call it his kissy face until it looks like something else. The time that he was monitored on the EEG was about 1 1/2 hours and i think he had at least 6 little siezures. Sounds bad, huh? He had them when he was happy and awake, while he was falling alseep, while he was sound asleep, and while he was waking up. Thats pretty lame, because alot of times abnormal brain activity tends to take place during one of these sleep/awake stages. So I think the neurologist is recommending medicating with Keppra. From what I understand the siezures arent causing any damange and if thats the case, my preference is going to be to stay un-medicated, but we'll discuss that more.

Paxson has been so happy and alert lately that I really really dont want to get him all drugged up again.

On a lighter note, I picked up his new glasses today, so I will try to get some pics posted ASAP.

Merry Christmas
(the more I say that the more sarcastic it feels...)

Paxson is Home

We got to bring baby Paxson home Friday afternoon, but not before he got to meet Miss Alaska and Santa (the day before). I will say this, the Hospital is not boring around the holiday.

So we are home now and Paxson is on an anti-reflux med, Prevacid. We are hoping this will do the trick but now alot of it will depend on whether we can get him gaining weight. Paxson is in the 75% for height, but only the 15% for weight. We are hoping to get him up around 50%. Unfortunately he has decided he is too grown-up for the bottle and doesnt really want much to do with it. Ideally he would be drinking about three 8oz bottles a day, but as it is now, he is drinking only about 5 oz all day. It is so frustrating. So we are trying our best to keep him well fed and hydrated. We are going to give it a few weeks. If things dont get significantly better, we will have to consider a g-tube... or g-button as they call it now (which is cuter I think). Robert and I got to check out a g-button and its really not as bad as I thought it would be. But obviously we still want to keep him without if its possible.

Regardless of all that, we are so happy to have our baby home for the holidays. He has been super happy through all this stuff and its really been harder on robert and I. We havent sent out christmas cards or done any shopping, but thats what happens sometimes I suppose.

We're going to try and make the most of these last few days before Christmas.

I hope everyone has a very merry christmas!!!

Paxson in the hospital

From The Adventures of Paxson

Uggg, this has been a crazy week. Paxson was admitted to the ER last Wednesday, Dec. 10th. He had been vomiting off and on since Thanksgiving and on that Wednesday he was not holding anything down, so we admitted him, he got an IV and we went home in the morning. I did an enema on Thursday to clear out constipation and they were hoping that would solve the problem. Unfortunately it didn’t and we went back and he was admitted Sat. morning (Dec. 13th). He automatically got an IV for fluids and we did a CT scan to make sure there was no swelling in his brain. Fortunately it was ok, but it was still depressing to see a picture of his brain. We hadn’t seen any since we left the hospital in January, and it is crazy to see this 'empty space' in the middle of his brain. But I guess the good news is it’s not any worse.
The one thing we have always been worried about is that Paxson’s brain will fail to communicate appropriately with his stomach in order to allow independent feeding. From day one, the issue of putting him on a G-tube (semi-permanent feeding tube) has always been in the background. So when Paxson transitioned to eating solid foods and was doing so good, we felt like it was an amazing blessing. But with the recent vomiting we worried he was backsliding and I really didn’t want him to have to get surgery and a G-tube for Christmas.
Hospitals are always difficult with little babies, but this time was especially stressful for us because this is all happening at the same time we were admitted to the hospital last year and it brings back so many bad memories. The other day these Christmas carolers came by the hospital and I took Paxson to the door so we could hear them and I just started crying and told Robert I was so sick of spending our holidays in the hospital. It’s also difficult because this time Paxson is so much more aware and alert so it seems harder to watch him getting poked and x-rayed and all the other stuff. He just screams and looks at me like "what the hell, mom". The good news is that thru all this he has not been acting sickly at all which is amazing because he basically went a week with no food (just some IV fluids). He still wants to play and read stories and he's totally stealing the hearts of all the nurses. Thats cute to watch

So we've been doing a bunch of test and the other day we did an upper GI (gastro-intestinal) test. One of the concerns is that he might have had delayed gastrinal release which basically means kids don’t process their food out; and the solution for that is really really slow feeding thru a G-tube for 20hrs a day. Significantly impacting their quality of life. Good News: it’s not that. But we did have to put in a feeding tube (NG - thru the nose)in order to get the barium into his system just so he good take the test but were using it to supplement feeding now so at least he's getting some calories. We did this test and put in the NG tube on Tuesday. And on Tuesday he also started holding down some solid food - yogurt.
He continued to eat more solids yesterday and has not been vomiting. So what we are thinking now is that his issues are still related to brain-stomach communication. Sometimes when these things aren’t working right the sphincter that closes the stomachs loosens and that results in these feeding/vomiting issues. Depending on the severity there are a couple solutions. On the preferable end, you can put kids on an anti-reflux medication and this should keep things down. If this doesn’t work, there is a surgery where you wrap the intestine around the stomach and this is usually coupled with the installation of a G-tube (for some period of time).
So right now, Paxson has been started on the anti-reflux and he's also on a more temporary anti-puke medication (I hope you appreciate all this medical terminology).
I'm happy to say that I am feeling confident this will do the trick and hopefully we will be out of the hospital soon!

I'll keep everyone posted. But until then, please keep Baby Paxson in your prayers.

Brithday Pics

PAXSON 1.0

ITS PAXSON'S FIRST BIRTHDAY
The party isnt until tomorrow, but I seriously cant believe that my baby has been on this earth for a year already. And what a crazy year it has been. Our life is so different now than it was before, But I wouldnt trade it for anything! I'm really excited to celebrate this occasion with all our friends and family. Paxson had such a rough start in life, that is so nice to reflect on his progress, celebrate his successes, and look forward to an easier fun-filled future!

Vision update

So, we got our second opinion today from another opthamologist. I am really excited because she recommended glasses before surgery to correct his strabismus. She believe there is a good chance that this could work for him. And also, he is far sighted and has a stimga, so the glasses will probably help see everything better. I cant wait to see if this results in any changes in how he understands his environment. We ordered the frames and we should have the glasses by next week. I will make sure to post a picture because I'm sure the glasses will be totally goofy and super cute!

Paxson's Birthday

Make a Smilebox greeting

HAPPY THANKSGIVING

ALL THE THINGS WE'RE THANKFUL FOR:

My Amazing Family and their daily love and support
My Friends who are patient with me and quick to share a laugh
My loving Husband Robert
My Adorable Sweet Baby boy Paxson, specifically that:
He is doing better than the doctors predicted
He is eating and not on a G-tube
He is smiling and happy
He started laughing
He has recently been exploring his hands more
He is so incredible good looking (must be from his mom)

Overall I truly thank god that I have such a wonderful life and am surrounding by so many kind and loving people

Good Updates

So here's whats new. We made a followup appoitment with another opthamologist (did i spell that right?) which i have learned is actually quite different from an optomotrist (got that wrong in my earlier posts) So we'll get some more info on the vision issue, but right now I can say Robert and I are probably not likely to do any eye surgery in the immediate future.

So on a happy note, I want to report that we have been seeing some cool stuff in Paxson. Just in the last week or so, we have seen noticeable improvement in his head control and his balance. We have been spending alot of time on the floor working on independant sitting. he can balance for a few seconds, but I think he is really starting to understand his protective reflexes of his arms/hands catching him from falling.

And the super cool thing we saw last night. We had him all cozy and relaxed laying on his back on the floor, and he started waving his hands in front of his face and then he was actually trying to put his hand in his mouth. We have never seen this! and it was so exciting. he stayed on the floor playing with his hands for a least 30min. That is a really big deal for Paxson. For of those of you that dont know paxson, he doesnt really use his hands at all and is still 'fisting' most of the time.

So we are really excited about this cool new stuff. Our friend Gail came over and prayed for paxson last week so we believe thats playing a role. And I'm not quite sure if the ABR is contributing. We are still struggling with getting our hours in, but if the little we've done is making a difference that is real motiviation to do more.

signing off, with more good things to come..

momma J

BEST THING EVER!!!

Wow, I cant even describe how happy I am to post this new development. Ok, I'll just cut to the chase and tell you what the Best thing ever is (i'm sure the suspense is killing you :)

PAXSON LAUGHED FOR THE FIRST TIME LAST NIGHT

So I need to get specific on the details here, we're not just talking about a cute baby giggle (which for the record he hasn't done)
He just went straight for the full on BELLY LAUGH. It was so cute and luckily Robert and my mom where both there to witness and he did it 5 times in a row. I was kissing the side of his face and neck and it must have tickled because he just doubled over with this smile and made this crazy chuckling noise and it was the best thing ever. My mom started crying, I think I could hear my heart sing and robert was cracking up!

So if you read my post yesterday, you can tell it was kindof a rough day. But I was praying on my home from work and I thing God and Paxson knew just what I needed and a bum day was turned into a day of blessing and celebration!!!


I also want to include an update on the vision issue - robert got me the specific language below:
and alot of the other mom's we have talked to have recommended trying non-invasive therapy's first. We are going to get a second opinion with another optomotrist and also I am going to contact Annie at ABR and see if she has any comment.

We took Paxson to the Pediatric Optometrist yesterday. He said that he
had Alternating esotropia with other noncomitancies. He wants to do a
small surgery to release the "muscle tension" that is preventing his
eyes from symmetrically aligning themselves when focusing.

If you have any thoughts on this let us know.


Yeah, Paxson smiles!

jess

If it not one thing its another...

So we went to the pediatric optomotrist today. I dont what exactly I was expecting, we havent been since paxson was 5 months old. We have noticed some subtle oddities in his vision, eyes not normally aligned, taking more time to focus, and different levels of dialation in his eyes. But I dont think I was expecting or prepared to hear the doc recommend surgery for my 11 month old baby. He explained that the surgery he is recommending will relax his eye muscles in order to improve his Binocular Vision, so he can see with both eyes in the same direction. Apparently his eyes are perfectly aligned when he is looking up, but he becomes cross eyed when trying to look down, and he prefers one eye over the other depending on which way he is looking to the side. This kinda makes sense because he always wants to throw his back and look upwards, which we know has to do with his neck structure but apparently it is also the way he sees best and the world make sense. When he is looking in other directions his vision inputs are out of wack. So, if corrected there could be improvements in his head control and also a greater awareness of his hands and body if he is able to glance downward at them more.

However, we just got the news and havent had time to do all our research, and I am not totally convinced that surgery is the only and/or best way to approach this. So its a little stressful to the say the least.

to top it off, i recently learned that we have a faith healer here at my company. She is a wonderful women and I have known her for quite a while and I just ran into her in the hall and she offered to come over and pray for Paxson. I already wanted her to do this, but as she was telling me some of her experiences I started getting all choked up. then i had to cry in the break room.
then i got really frustrated because i still cant understand why robert and i have to go through all this, and it so much easier for some people. But then i remind myself its all relative and ultimately we are a really blessed family and paxson is without a doubt our greatest treasure and light of our day.

I just wish I had the infinite wisdom to always know what was best for him...

ABR Slacker

well, a few days after we returned from Montreal Robert and I left the country for our honeymoon... selfish I know. Paxson was juggled between both grammas with the help of amazing friends and family. I don't know if it is weird that we were comfortable leaving our baby for 10days. But they way that Robert and I figure it, our parents have more experience than we do at this parenting thing. We totally missed baby paxson but he did great while we were gone. My mom came to Montreal to learn ABR so she attempted to get some in while she had him, but we are quickly learning this a two person job. On a side note, every since Paxson was born I have this insane respect and amazement for single moms - props to any out there.
Back to my point, as usual I feel like a slacker mom. it is so hard to find the time for ABR. We knew all along it was going to be a big committment, and we had thought alot about how we would find 3 hours in the day. What we failed to realize is that we really had to find 3hrs in Paxson's day, meaning he is still and cooperative; read: asleep. So we're thinking about juggling work schedule to go in late and try and get some done in the morning. I'll keep you posted.

Also, Paxson has an appt with a vision specialist. this will only be his second.
his first one was when he was 4 or 5 months old and the doc said everything looked except he had a slight stigma and farsightedness (but thats normal kid stuff) So I am really curious to see what he says this time. We have noticed some drifting of his left eye and sometimes it seems like he cant focus easily. that being said, he can track like no other... so we'll see

signing out
mom

Post ABR... if I have to

I'm exhausted just thinking about writing this post, there are too many thoughts/emotions running around in my head. But I know I need to get it all out or I never will. So here goes... In a nutshell our trip to ABR in Montreal was wonderful, informative, concerning, stressful, and sweet.
I don’t know how much I am going to get into the details of ABR, some of the other moms did a much better job and I'll just refer to that. I've never denied being a slacker :) Check out: Daniel, Fletcher & Charlie, Their moms do a great play-by-play of the ABR Week
The gist of it is we had an orientation on Sunday
Monday thru Thursday Training sessions from 9-12
Monday initial assessment w/Gavin at 1
Tuesday detailed assessment w/Leonid

So for the most part it went great. Paxson was completely off schedule (lol as if he had one to begin with) because of the 4 hour time difference. So he was going to bed between 2-3am and we were getting up at 6:30 am. Needless to say we were all exhausted and a little cranky. But Paxson seemed really happy. The car we rented had two moon roofs and he loved staring out it on the ride to the center. Then he mostly slept through the training which really worked out great for us since he couldnt fuss or squirm around.

We learned 3 exercises that we took home with us and we are directly to get in a minimum of an hour a day on each exercise = 3hrs a day. Where will we find the time? Don’t know yet, but we have yet to think of anything that could be more important.

So I have to say the absolute best thing about the trip was meeting all the other kids and parents there. The moms were all so cool, and it was so neat to have people to talk to that understood what we were going through. Paxson was the youngest one there and I relished the opportunity to ask everyone "when did you kid starting doing... (fill in the blank)"

From ABR

This me & Paxson, Melanie & Daniel, Erin & Fletcher - amazing moms with adorable kids

From ABR

Here's another one with Melanie & Daniel. We let Robert get in this picture too

All of these conversations were invaluable but left me with mixed feelings. The good news is, they are wonderful people with happy families, so I know despite this rough patch, we have and will continue to have a wonderful life no matter challenages we face in the future.
This next point will probably sound a little shallow, but we just think Paxson is so darn cute that we've been worried he is going to start looking all weird (clearly I haven’t mastered the 'special needs' PC vocabulary) But I am happy to say these kiddos are so adorable. I wanted to scoop them all up and play with them. I did with some, but I thought some of the parents might think I was a weirdo :)
The other thing that really excited me was that a lot of these kids are really doing good and have great personalities and there is still a lot of developing Paxson is still doing.
Oh, and one more thing - right before we were leaving for Montreal I was going through this phase where I was feeling like a total failure-mom and that there were all things out there that Paxson was missing out on. But after talking to the moms, I really feel like we are on the right track for his age. I think starting ABR now is great, the feeding, nutrition, playtime, vision, everything is similar to what all the other parents went through.

After writing all that I almost forgot what I was going to say about the not-so-good parts. But now I remember. So before we left, we clearly knew that Paxson had "issues” and I could feel that his body/structure was getting all out of wack, but I've never had an interest in Physiology so I never really grasped the whole effect. Well, we got the low-down and it isn’t pretty, but it is typical for Cerebral Palsy Kids. I'm copying from Erin's post since her son's was similar
"I guess the bottom line is that, since Fletcher's internal smooth muscles (which are oversimplified terms, but I am no doctor or scientist, so it is the best I can do) are not built up, his skeleton is more or less collapsing in on itself and the bones don't have enough room to move independently, so he moves as one block. It was the most evident when he was laying on his side and Leonid rolled him at the shoulder and his whole body (including pelvis and legs) moved as well. This collapse has led to most parts of his body being in the wrong place (and "wrong place, wrong movement" so the resulting functions of these body parts are affected). His jaw is slightly recessed, adam's apple very high in his throat, clavicle wrapping around his neck, shoulder blades too high, ribs flared out at the abdomen, no butt (thin and narrow pelvis), no rotation at the waist, you get the idea."

Yeah, Paxson was similar; he also doesn’t have a jaw line. Which for some reason we found funny. We thought he just had really chubby cheeks. Which he is does, but if you pull away all that baby fat, you still can’t really find his jaw bone. and his cheek bones and brow bone are also not developing normally. Another funny test because you can cover his eyes with his cheek and/or forehead fat. I know this doesn’t sound funny at all but his face is so cute and it’s ok because we promised him we would get to those jaw/cheek/brow bones in the right place. We just need to a little rearranging... all over the body. We did ask Leonid in the evaluation to give us some idea of where of Paxson was on the severity spectrum, which he declined to do (no big surprise) But he did say that getting him in there so young would really work to his benefit. And I really do feel like we are in the right place. I am excited to see some improvements and I'll keep everyone posted.

From ABR

Great people at ABR - Gavin, Leonid, and Christina

Ok, I'm getting worn out but I will probably have more to say about this trip - plus we did do some fun non-ABR stuff that. but I'll save that for another post.

-Mom