FUN IN MY NEW HIGHCHAIR!!!

Mom took these the other day and forgot to post...how could she forget??? Look at how super cute I am! We just got this highchair, and it is working out great!

She thought I might enjoy playing with some empty formula cans. She was right!!! They make so much noise...loud enough for me to hear! SUPER COOL! (It's hard to find toys loud enough for us kiddos with significant hearing loss...so this was a great score!!!)

I love this, I love this!














Mommy, this is so fun! And apparently Shakespeare thinks so too! (Note his nose in the corner!)

















Hey, where'd my cans go? (King Max LOVES to toss toys and then whimpers until they are returned to his majesty!)

















Silly Mommy!!! She's shaking the toys in the cans and making lots of noises! Love that!


















Ok, this is fun and all...but I am wiped out! Time for nappy nap!

















P.S.
Yay! 12 hours of nooooooo vomiting! Yay!!! Mom found a trick (time consuming but soooo worth it!) that seems to be working. She gives me super, super small amounts all throughout the day. For example, I get 1000 cc a day of formula and she only gives 10 - 20 cc (max) at a time. She is constantly at my Gtube (50-100 times a day!!!), but heck it is working! And we are trying to do the majority of that when I am upright, but I like to move around a lot...so that is difficult. Let's hope this vomiting spell is over...that would be fantastic! Then we will try to get back to my normal feeding schedule. :)

ALSO, thanks everyone for your encouraging emails to Mom about ways to help with the stress...very appreciated! She even tried my inhalers the other day to see if that would work!!! :) Today she is going to make some Halloween signs to decorate children's rooms at the hospital. Hopefully that helps her relax! :) We head down this week to Children's for a few days (gazillion clinic appointments) so we can deliver them then. Thanks again everyone for your love and support...you are wonderful!!!

MY STRESS

Ok I'll admit it...the stress of being a single mom of a special needs child gets to me. I try to not let it, I really do. I try to stay focused on all of our wonderful blessings and the amazing progress of Maxwell.

But even with all the joy and love of Maxwell, there is the major stress of all of his needs and my concerns for our future. There is no denying that. (And I imagine the divorce proceedings have contributed to the stress too.)

My body has certainly felt the impact. I have been having a very difficult time breathing...and sometimes I just cannot catch my breath.

This also happened a few years ago after two miscarriages in a row and my husband (at the time) was beginning his campaign and there were rumors about his "extracurricular" activities. (At the time, I thought they were just rumors but perhaps my subconscious -- via my breathing -- was trying to tell me something about my marriage!) I was checked out by a doctor and they thought it was asthma. But we did the series of tests and all was well...so we chalked it up to stress.

Well, the breathing issue is back BIG time, and it is really frustrating. It happens at least several times a day.

So I finally talked with my doctor (Max's doctor) about it, and he thinks it is stress. First he wants to rule out any physical issues, so he recommended a doctor and is going to get me in pronto.

I was pretty emotional about it, but he was absolutely wonderful. He was telling me that in med school they researched the various levels of stress and at what point is a person at risk for a heart attack. He put that at level 150 and then said, but Amy your stress is probably a 350! I was telling him how upset I am that my body is not cooperating and he said the fact that I am still standing is impressive in itself....and that my body is actually doing really well considering all that has happened. He and his team are so incredible with me and Maxwell...and I am so grateful. I always feel so supported by them...thank you!

Hopefully we get some answers soon, and I can overcome this breathing issue. If not, maybe I'll just check into the Chrysalis for a week long massage!

FELLOW SPECIAL NEEDS MOMS/DADS: Any suggestions? How do you cope? Ever had this breathing issue? (And does it happen in completely random times, when you feel "ok" otherwise?) Feel free to email me directly: amysmckinley@aol.com. Thanks!

POOR LIL' MAX

On the way to the doctor's today, I felt some "crusty" matter on my cheek, then I noticed it was on my neck too. Yep...good ol' dried vomit from Maxwell. YUM. Does that give you an idea of our morning? Poor lil' Max was coughing, sneezing and gagging so much that he vomited many, many times. It was a continuous cycle of coughing, vomiting, suctioning, comforting.

I gave him a warm bath to soothe him and clean him off but neglected to clean the vomit off me too! Oh well, at least I had changed my shirt (for the third time this morning).

Soooo...basically we are just going to keep a close eye on him (what's new?), increase his breathing treatments, and definitely make sure he isn't getting any sicker. He's a little warm, but not running a high fever at this point.

He definitely is not himself right now...quite cranky and sad. Lots of whimpering in between his coughing. But hopefully we will kick this over the weekend. We don't have a nurse again tonight, and tomorrow I had to cancel my plans because there was a new nurse starting...and this definitely isn't a good time for a new nurse on her own! The vomiting out of the nose and aspiration risk is a bit frightening for Max "newbies!"

ON ALL FOURS?!?!

Yep, that's right! Yet ANOTHER incredible milestone for me, Mighty Max! I finally am getting the strength to get on all fours...soooooo exciting! :)

Remember my upper body is a little (ok, a lot) on the weaker side, so this is a BIG improvement for me! MAJOR! Mom and I cannot wait to get together with our OT/PT...they are going to be very, very, very excited! We have been working on this for months!!! Just to be silly, I don't usually like to perform all my tricks for my OT/PT, so Mom made sure to take photos for proof!

This was right before my bath. Mom was trying to get me to taste pureed carrots...that was a lot of fun. Everywhere but my mouth! :)


Ok this is how I start.













And presto, I AM UP! Yippee!












...then back down! Opps!













I'm going to try this again! Can someone please move this chair though?










*This amazing moment was yesterday...before I started to get sick again. I started vomiting last night and didn't improve much today. Oxygen levels were up and breathing treatments had to be increased. Plus I have been a tad cranky and crying quite a lot. Mom is taking me to the doctor tomorrow morning just to make sure nothing serious is brewing. Hopefully this passes soon so I can get back to the amazing adventures of Mighty Max!!!

PRAYERS FOR SWEET MEAGAN

Below is a recent post from a fellow CHARGE mom. She is an absolutely fabulous, dedicated and loving mommy to her three children - Meagan, a 20 month old with CHARGE, her healthy twin sister, and an older brother. As you can imagine, this mom has her hands full! But fortunately she says her husband is truly incredible and a major support.

Meagan has been having some complications recently with her brain and there has been a lot of confusion on what to do. This obviously has been frightening for the family. She had brain surgery a few weeks ago and the recovery was not going very well. My heart absolutely broke when reading this post on the latest news, and I wanted to share with you so that you could keep this precious girl in your prayers. Thank you everyone!


As you all know, Meagan has been very sick as of late. We finally took her back to the ER Monday morning after talking to her neuro surgeon's staff. Luckily, while fighting for Meagan on the phone, I was passed off to the Nurse Practitioner who took care of us in the PICU after her last brain surgery. She agreed that something was not right.

Once in the ER, and upon inspection of her "bubble" (which was now larger), she alerted Meagan's neurosurgeon that she was suspicious the patch had broken, or a suture had torn in turn leaking cerebral spinal fluid. We were admitted into the PICU that day and an MRI was ordered of her brain.

It was the news we were dreading. Meagan's hydrocephalus was now out of control resulting in her brain being pushed against her skull. There was so much pressure from the hydrocephalus, that her ventricles were remarkably larger, forcing the water around her brain out (to make room for the brain), and her Chiari was worse than ever because it was again being pushed down the spinal column. The "bubble" was the fluid from around her brain looking for away out.

Dr Moss came in Tuesday morning and gave us the grim truth. His words were that Meagan was in trouble. He said within the next couple of days, the patch would tear open and her brain (specifically her cerebellum) would be forced out trough the opening. He also said that a week from now, we wouldn't be having this conversation because if Meagan would have made it that long, he would be wheeling her into the OR so fast that it would have left Kevin and I spinning in her room not knowing what had just happened.

Her vomiting and nausea were direct results of her hydrocephalus being out of control. The only option we had at this point was to shunt her. He was going to give us the night to digest this information before we signed the consent forms, but Kevin and I realized that our backs were against the wall. The only thing we could do to save her was to do this surgery.

The surgery was bumped up last night after a bout of vomiting from Meagan, and after Meagan's nurse inspected her "bubble". It was now firm to the touch meaning that the bovine patch that was placed in Meagan was about to burst. We signed consent forms immediately, and she was in the OR within an hour.

The surgery went well, and was successful. The "bubble" had softened by the time she was sutured back up, and by the time I left the hospital at 10 PM, it was gone. A cat scan was done this morning to make sure the shunt was in the correct places (and it was), and it showed that her ventricles were already shrinking.

Within the next couple of months, Meagan's ventricles will be of normal size. This should allow the water to return around her brain and her cerebellum to return to it's original corrected position. The shunt is in her right ventricle, and runs down her neck into her abdominal cavity. At the moment it is not pretty, as Meagan has lost 4 pounds (which she couldn't afford to lose in the beginning) and you can see the path the tube runs down. When she cries, it looks like she has a garden hose running down the length of her body.

But, we have seen a complete 180 in Megan's behavior and tolerance. An hour after surgery, she was playing! I type this with tears in my eyes because I haven't seen my little girl smile in weeks. She is home tonight, and was greeted by some very excited siblings and grandparents. She seems to be very comfortable and happy to be home. There are definite risks with having a shunt, but they are minimal in comparison to the beautiful life it saved.

*** PLEASE KEEP MEAGAN IN YOUR PRAYERS!!! ***

WHERE IN THE WORLD...

IS MIGHTY, MIGHTY MAXWELL???

The amazing news is that Maxwell recently became mobile and this new development is soooo fabulous!!! He absolutely loves to scoot his body all around. He isn't "crawling" yet, it's more of a creep. He keeps his head and upper body on the ground and scoots using his legs. It takes A LOT of effort, but he is so determined. Quite adorable!

CHARGErs tend to have very weak upper bodies so it takes a lot for them to reach the official crawling stage...but maybe just maybe, we'll do it!!! He certainly is trying!

So the other day we had a fun little mishap with his new mobility. I left Maxwell on the floor in his room with some toys and within a few minutes, I hear whimpering. So I go to get him but cannot find him. I'm looking in every nook and cranny in his room but no success. Then I hear the crying again...and realize it is coming from UNDER the bed! He was stuck in the corner and definitely a bit scared! But of course I absolutely had to capture this on film, it was just too funny!!!


Here is the very sad lil' guy.

He was better once he saw me...and especially when he saw the camera!

WE ARE NOT GIVING UP!

Mommy and I are really, really, really trying to overcome my eating issues...but boy do we have a long way to go! Most of it goes everywhere BUT my mouth, but at least we are trying!


Alright, I'll take one more bite...



















I love to chew on my spoon...that's the best part!


















I've had it up to here Mommy...can we stop?


















Ok fine, then I will just cover my face!

BACK HOME!

Arrived back home yesterday afternoon...sooo excited to see my lil' man but also soooo exhausted! Yikes, two days of traveling cross country, very little sleep, and one day of divorce proceedings really wipes you out!

The hearing went ok...thanks for all the supportive emails everyone. There were moments of MAJOR frustration, but that is to be expected. The good news is that I don't have to travel back anymore, but the bad news is that this won't be officially finalized for many more months. I can't say much more right now, but basically the most important thing is that I believe the judge understands the true seriousness of the situation. That was quite evident at the end of the day. So we'll see...

The really good news is that Max did just fine with the nurses during my trip. I got a couple of calls during the hearing about a few medical issues, but nothing too serious. He had some bradycardia one night, which was particularly odd. And the pulmonogist called several times to talk with me about Max's recent vomiting episodes. We are trying to decide if he needs more tests, possible surgery or just let it be for now. Fortunately the judge was very understanding in letting me take all the phone calls during the hearing.

I have lots and lots of adorable photos of Mighty Max to post...I'll try and do a few tonight! He is making some really great progress! :)