Another Chronic Fever Specialist...

First off, I wanted to say THANK YOU! to everyone who reached out and chatted with me about my previous blog post. I had no idea how many people thought about us, cared, or just wondered about Jaxson...and reached out to me. Thank you, you're amazing and you made me feel so very loved yesterday.

Today I am taking Jaxson to go to the ENT specialist as recommended by the neurologist in Boston. They say there is a disease that causes abscesses in the adenoids and tonsils that can cause a chronic fever and little other symptoms. Though I feel this is unlikely since he did not respond to antibiotics when he had Lyme Disease and he's NEVER had an ear infection, we have to cross it off our list. If they do find this, it will likely mean surgery for Jaxson. We are also getting his hearing tested again today. This will be his 4th test. Because of the type of ventilator he was on, and the fact that Josh has mild hearing loss, and I have severe/moderate loss from a congenital birth defect, it is something we need to keep an eye with Jaxson anyhow and It might give us some answers as to why he is not responding to his name, and is very sensitive to low noises but not high pitched.

We are on our own today, Josh is at work. I'm thinking this is a great time to go check out something yummy since we have to drive to portland anyhow...Just not sure what yet :)

What's Been Going On...

We are back!
It has been a long time since I've found myself any time to sit down and actually write something, though I have been needing to for a while. Writing my thoughts, my feelings and my worries is like the best therapy for me, and I'm finding I need that more than ever right now!

First, I'd like to update on Jaxson.
He is almost 2 years old! He is 24lbs, 32inches long and he's growing and learning a little more each day! The doctors all say he's going to be a short guy when he grows up....But, He's got some pretty big shoes to fill - Have you seen his daddy?!  (Biiiig guy!)

Health wise, it has been a very hard year and a half, full of never ending appointments, therapy, questions and fears. I know a lot of our family and friends either do not know what is going on with Jaxson, or are very confused - which we get, Josh and I are also very, very confused..... so I thought this blog with be a great opportunity to explain some of what we've been going through.


Very Mild Spastic Cerebral Palsy
Jaxson has had an in home physical therapist since he was born. Around 7 months of age, we started noticing that Jaxosn's left foot turned in when he was in his high chair and when he was being held. He started to have spasms - called clonus in this leg when I was feeding him a bottle. Since he was so young,  We've all opted for a wait and see approach. When Jaxson first started to crawl (he was 11 1/2 months old), his therapist noticed that his left hand was curled in when he did so, his thumb tightly pressed into his palm. Again, We decided to wait and see for improvement.  By the time Jaxson was 17 months, He was not standing on his own, he would hold onto furniture, but he would not let go. He preferred to crawl to get around and would resist to being walked with his hands. This raised some red flags to our therapist and to our neurologist. They suggested an SMO braces for Jaxson to support his ankles. He was walking on the side of his ankles and he was weak and would fall. He was hyper-reflexive on the left side. By this time we had started constraint therapy on his hand, and he started to use his left side a lot more - we caught it at the right time! When Jaxson's SMO's came in, He was 18 1/2 months old and still not standing on his own. With ONLY  2 weeks of the braces, he was able to stand on his own, and took a few wobbly steps. Now at 23 months old, Jaxson is walking. Walking slowly he does well, but is very wobbly and turned in when he tries to run. He likes to go on his tippy toes when he does not use his braces. Due to some other issues, which I'll discuss later, our Neurologist suggested that we do an MRI. 

Left hand in fist, left leg hanging out behind him, left eye (psuedostabismus) 

 The MRI findings showed a small spot on his brain, and he was given the diagnosis PVL (Periventricular Leukomalacia) which in a nut shell is - white matter damage which was likely caused by oxygen deprivation when his lungs collapsed so often when he was born. (Premature infants are extremely susceptible to this brain injury). She then told me, that this was most likely a very mild spastic cerebral palsy and it wont ever go away, but with help of therapy - we should get it so that only he and the neurologist would be able to tell he even has it at all. Jaxson is doing extremely well with this, and all our therapy! People who do not spend a lot of time with him will most likely will not  notice his left sided weakness unless I point it out to them... I notice everything, every curl of his fingers, every drag of his legs...but it is all I've done since he was 7 months old! (Watch and worry). When Jaxson is sick, or not feeling well, You certainly can tell - He falls and cannot catch himself, He gets hurt a lot, and will not use his arm at all. My family has seen this, and is so shocked by the change in Jaxson when he has these days. I am glad that the therapy we have done for Jaxson has made this so easy for Jaxson, I am so glad we caught this so early. It will likely be mostly annoying for him, he may not be able to do things like sports, but we'll help him cross those bridges when we get there! He also will be getting a small, soft hand brace to keep that pesky thumb out ALL the time!

It hurts sometimes when people say "I don't see anything wrong with him, he's perfect!" Honestly...I hope you don't see it, I'm glad you don't. I don't spend 3 days a week at therapy so you could. But it is real, and it is there... as is my fear, and worry for his future.... All real. However,We are so incredibly blessed that it is mild...


Seizures/Developmentally
Jaxson was just recently diagnosed with Epilepsy on August 22nd from a Neurologist in Boston. Epilepsy often goes hand and hand with CP. We have started on Keppra (and He's really had a horrible time on this medication....Long story and I wont get into it here). We started noticing around Easter that Jaxson was having these starring spells, though at first we thought they were just normal tuning out, anxiety ect...until they started increasing in duration and he started to lose consciousness, excessive drooling, and he would also lose his blink response often. We have had 2 different testing for this, one in the doctors office and another was a 3 day hospital stay (also the MRI). Developmentally Jaxson is struggling.  He is not hitting many milestones that he should for even his adjusted age. Firstly is Speech (We see a speech therapist 2 x a week) Currently, He has 1 consistent word and that is "sit". Though he babbles, and we hear words such as Mama, Dadda, Nana, he is not consistent with them and does not use them directed at us or objects at all. We use sign language. He signs "Bottle" and that is his sign for all things eat or drink. He also can sign "all done" but that has currently been lost. As far as communication - it is hard, frustrating, but we guess and play "choices". Although He has had some words and signs before-  many of them have regressed from time to time and he goes months without remembering them, forgets them. Sometimes they come back but some have yet to come back. Regression is never a good thing. The neurologist in Boston said there are some rare disorders that could be causing this, (that I was not given the names of), It is possible that its all linked to seizures  or this could be a sign of autism spectrum (though Jaxson is so incredibly social, He does have signs/flags and we have that appointment next week, though they will likely want to see how he does on Keppra) Early intervention is the key for most everything here. He has some abnormal behavior concerns.There are a lot of different things of development that is of concern for Jaxson...Too many to write, if you want to know more about this, please ask me because I would be more than happy to talk about it.


Chronic Fever
Jaxson suffers from chronic fever of unknown origion. He is always between 100.6f to 101F. I consider that his "normal" temperature. When he is sick (as when he had Lyme disease, his temps reach in the high 103's to 104.8, and even something as simple as teething, it cannot be brought down with NSAIDS or tylenol).  The heat of the environment also effects this, so there has been times its felt completely out of my control. He has had this for over a year, and we have gone to infectious disease, immunology, ENT, and Neurology for this. We have gone through about 20 thermometers. We do not have any answers. We do not know if its related to the seizures  other than the high fever is a trigger to the seizures  We are going to see a specialist this week for his ears/adenoids but this most likely isn't the cause, since his fever does not respond to antibiotics. (but another thing we have to investigate) I am not sure what happens after Keppra and the adenoids are ruled out. They spoke to me about genetic syndromes....I don't know. We had to give up on our Summer. We tried to do things and even risked the Fourth of July Parade but he got a dangerously high fever, glassy eyes, had a seizure  so instead of being with our family and having a normal cook out that afternoon, we had to stay inside by ourselves with the A/C, as we have had to all Summer. Honestly it was really hard, it still is. It is lonely. We play outside in the early morning and in the late evening. We do not go for car rides when its hot. We do our errands in the evening. Prevention has been the best key for him, since I cannot effectively cool him. I'll let you know more on this as we continue to learn...its a weird one and he puzzles everyone with this!

I guess those are the biggest concerns... I am sorry for those who didn't have this information and really needed it. Some days I feel like I have failed as a wife, as mother, as a daughter, as a daughter in law, as a sister, as a friend...I know that I am not the kind of person that I want to and should be to those people...Not like I use to be before all of this. Most days I am consumed by this, and spend whatever time I can with my husband and Jaxson. Most days we just focus on doing fun stuff with him, because we are just so emotionally exhausted and scared. Maybe it seems like we are always busy...and I guess honestly we really are. I love you all, and I appreciate the love and support you give us. Please be patient with us...We are in the unknown, and it is hard. Love us even if we make mistakes. Love us even when we are crazy. Hug us when we are scared...because we are SO scared....Please try to understand...Please be patient....We love you all so much.

Happy 7 months!

Happy 7 months to my sweet little boy.... I cannot believe how time flies, and I cannot believe how much you've grown. You amaze me in all you have accomplished and continued to accomplish. I can't wait to continue to amaze doctors and prove them wrong! You're nothing "short" of AWESOME! Mama and Daddy (and your brothers) love you!!! ♥

I have not been doing a very good job keeping up this blog! I am sorry! I am finding out that being a mom to a premature baby keeps me continuously busy on my toes with what seems like never ending appointments and visiting nurse/therapist appointments. Jaxson is now 6 months old. He is doing amazing, more so than I ever thought possible and Josh and I have a knock on wood ritual every morning to hope that it stays this way. Seems almost too good to be true! Anyway, I just wanted to let you all know that I am planning on keeping up with this blog, to help other moms and also, Jaxson's progress.

On 5/15/2012 Jaxson weighs in at 15lbs 14 oz, and is 26 inches tall 

Preemie Parents Day

Today, for Preemie Parents Day, I am remembering and sending love to my fellow preemie moms and dads for all that you have been feeling, or are currently feeling. Your love, strength and courage for your baby is inspirational. I am not alone with feeling like I was torn into peices when I had to leave my baby behind in the hospital and drove away when I should have been bringing him home. How hard it was not to be able to see him or touch him after he was born, or being able to hold him or let alone touch for weeks  without asking permission first. I remember how scared we were when we called the NICU every hour during the night (Im sure we drove the nurses nuts!), waiting to hear bad news, praying for the best, scared every time the phone rang that it would be THAT call. I remember watching my son fight and suffer with daily procedures, chest tubes, morphine, ventilators and feeding tubes, begging for him to be ok - asking the doctors if we were having him suffering too much- should I let him go to Heaven? As I hold him tight now, remembering with tear filled eyes - I am so thankful, I feel so incredibly blessed. Though some of our babies are out of the hospitial, they are still preemies and most of us have many long battles ahead of us yet. So I remember you Preemie Moms and Dads - you are not alone! We love you. Stay strong! Happy Preemie Parents Day!

We're Home!

A very long overdue update...so much has happened!
We have been home since December 3rd.. just in time for Christmas! Jaxson is now 10 weeks old, and he weighs in at 8lbs 3oz, and is 19 inches long. A big improvement from when we left the hospital. He is doing fantastic! He is wiggling around, looking around and focusing on things, and starting to make some noises. We are hoping that he'll smile soon, but according to the doctor - his adjusted age means developmentally, he is only one week old. As far as health goes, all that we can complain about is a very slow, immature digestive system and a pretty nasty umbilical hernia - I'd say we are pretty damn blessed!


He has changed so very much...every once in a while I will look through the photos of when he was born and compare them to now...tears fill my eyes to remember such a hard, lonely and sad time...but look at where we are today? My heart is on the outside, looking up at me...cuddling with me...needing me. He is my everything. Words cannot describe the love that Josh and I have for Jaxson...yes that love a parent has for their child, but a stronger bond that we share as we all fought so hard for everything we have.





I am glad to be back and to start sharing a much happier story with you all!

Homeward Bound!

After 6 weeks in the NICU, Jaxson is coming home with us today. Thanks to all of your love and support, for keeping us strong, we were able to help Jaxson fight his fight. We have left the chest tubes and ventilators behind, and we are going home that puppy dreamland! Hehe! I am extremely proud of my son for being so strong that we were able to go home much earlier than our due date. I'll keep you posted from home and will update our blog frequently. We love you all, Thank you for all you have done for us!!!