Picture Post-Zoo Day!

Rylan and his daddy at the zoo!

 

I love watching Rylan and his daddy being together! My husband is such a good husband and father. He really loves us and means the world to us. I don't think I tell him enough how much he means to Rylan and I. So, Tony if you ever see this. . .Rylan and I both love you and appreciate everything you do for us ♥

Rylan was having a good picture day this day lol

This is something new at the St Louis Zoo, it was awesome

He looks like such a big boy here!

Saying good bye to the zoo

Mommy, Rylan. . .and Leo! LOL

LOVE ♥

Growing Boy ♥

 Look how big Rylan has gotten! His current growth stats are 36lbs and 41 inches tall! I can't believe he's hit that much of a growth spurt just in the past couple of weeks. It's amazing to me how he is doing :) He is officially off of 2 medications (periactin and inderal) both for migraines. He still has abdominal migraines when he is stressed out. 

He officially starts Kindergarten on Thursday! He has frequent meltdowns any time I mention him starting school soon, so that's going to be hard because he is just not ready and not excited about it at all :/ but he will get through it. He had a neurologist appointment on Friday and they are talking about doing some genetic testing with him as he gets older if he is still having these health and development issues. They also think he may have ADD and if the school feels the same way we will have to take him back in to get tested for it and possibly add another med. They also said that his development is being affected by his seizures and they don't like that, but we will just have to see how everything goes the older he gets.

Well that's all I have for now. I will leave you with a couple of sweet pics of Rylan ♥

Update on Rylan

Rylan has been doing pretty well lately. He goes to therapy twice a week and is doing pretty well in it. He's been in therapy since September and hasn't met any of his goals yet, but they said he is progressing towards them so that's better than nothing right now. We are in the process of trying to get him into school for the next couple months. His seizures are pretty much under control. He's only had 1 in the last couple months. Right now our main concern is his development and learning. He turns 5 years old in May and then will start school in August of this year (hard to believe!). His weight is only at 31.6 lbs, but I can tell he is growing. He just grew into 24 month clothes and is now growing out of them too. He has not had any issues with his abdominal migraines. He sure has come a long way in the past few months. In February he is scheduled for his first eye doctor appointment. He cries a lot about his eyes so it's time to get them checked out to rule out anything related to his eye, if everything is okay there then the eye pain is from his migraines.

In December we moved out of my parents house and got a place of our own. Rylan loves it here. He gets his own room and has all of his toys and video games in there. He still sleeps in our room on his little toddler bed though. We are not comfortable enough to let him be in his own room by himself. Along with the big life change has came a big change in Rylan's behavior. He has been having a lot of issues with aggression and meltdowns. He falls apart over the smallest things. I really have no idea what got into him, but the last couple days he seems to be more calmer. Well that's all I have for right now ♥ 

Failure To Thrive

http://kidshealth.org/parent/growth/growth/failure_thrive.html

This link explains what Failure To Thrive is. Rylan has always been small since birth (5% on growth charts) but it wasn't until he was 3 years old that he stopped being able to gain weight properly he didn't gain at all for a whole year and that alone made him drop on the growth charts which is when his pedi decided that he was FTT. His height also suffered and he isn't growing like he should. He is still off the charts on height but because he is on periactin he has started to gain weight. At 4 years old just reached 31 lbs. He has been through so much. I will also be making other posts about his other health conditions he has too throughout the day.

This pic is of my 2 year old nephew and my 4 year old son. It's a good comparison to see just how small he is.

♥ Lizzy

The Good and the Bad Adventures of Rylan

Sorry it's been a while since I have updated this blog! Just get busy with life and it takes a back burner lol. 

Onto Ryry. . .he has been diagnosed with abdominal migraines and his GI put him on this medication called periactin and it is also used as an appetite stimulant. It has been such a blessing to have him on it. He has been on it for nearly 4 weeks and has already gained 3 lbs! He eats so much now. He can't be on this med permanently though so in 6 months they are going to be taking him off the med. I will be curious to see how he does without it. 

This past Friday he has been starting this new possible seizure :( it's so hard to see him go through this all. In one instance he is doing so good but in other areas he is going backwards. His neuro wants to set him up with a sleep deprived EEG to hopefully catch these, it only happens while he is sleeping though. 

A few updates on little Rylan. Since the last update (in December) Rylan has officially hit the 28 lb mark! This is a big milestone for Rylan, because he was at 27lbs since August of 2012. He just gained this in the last few days so I am a little nervous that it could go back down but I am hoping this sticks :) He also had a good Easter.  The pic above is him on Easter Sunday ♥

So with the good comes the bad. . .

In February of this year he started these weird vomiting episodes where he will cry and hold his tummy in pain, he will do this for a few minutes and then he vomits, he normally will only vomit anything that he has eaten that day and usually nothing more than that, and these usually happens in the mornings so he really doesn't vomit a whole lot. During these episodes he gets real tired, pale and shaky, and then afterwards he falls asleep for a couple hours and then once he wakes up he is completely normal like nothing even happened. He did this for 3 days in a row in February and he also did this for 4 days in a row in March. Every time the exact same thing happens, which along with him falling asleep and that there is a pattern to it has me worried.  So we are set to see a GI specialist tomorrow, to hopefully get to the bottom of his lack of weight gain, vomiting and constipation issues.

Also on April 11th he is going to be inpatient for a 24 hour Video EEG and the next day he is getting an MRI done to make sure nothing has changed. I know we have nothing to worry about but I am a little nervous, because when he had the MRI the last time he just turned 2 and he didn't have all these other symptoms. So I worry that they could find something on his MRI, but I can't let that thought get to me.

He is turning 4 next month and he is so little it makes it hard to believe I will have a 4 year old. He is also doing great in school. He misses quite a few days when he is sick and then all his doctors appointments but they are very understanding about it. Right now he is home sick, he isn't to bad right now, but he is running a slight fever so they don't want him at school if there is a fever. I guess that's all the updates for now ♥

2nd Opinion

We finally decided to take Rylan to get a 2nd opinion. It was with our Family Doctor and it was the best decision we could have made. My parents helped a lot and paid for the first visit, but my husband and I have decided to pay out of pocket and keep him as one of Rylan's doctors for the big stuff and only go to his pediatrician when he is sick. It's sad it has had to come to that but we were sick of seeing Rylan's issues growing and they were doing nothing about it. 

So we took him Friday (12-7-12) and I love this doctor because he doesn't sugar coat anything, and he doesn't do the wait and see game that so many doctors like to do. Granted I am a little impatient, but that's not the doctors fault, I just have to trust that God has control over everything and it will happen on his time not mine. It was easier to see this doctor because he is my doctor and my moms so we knew how he was before we set this appointment up (I just thank God that he see's children:) Anyway he started off by asking us what the problems were so we told him about his lack of growth and how the pedi wasn't doing much and that we were concerned about it. He then examined him and he immediately notices Rylan's lymph nodes and shows concern about it, so I went on to explain the first time we noticed it. I go on to show him a picture of the bump that appeared on his back a few months ago. He says that there are lymph nodes everywhere on your body (his pedi says that wasn't a lymph node -but it moved around like one). So then he asks about any testing that he's had done so I pull out the copies of the tests that I had printed out and he is pretty happy that I had done that. He looks through it and I explain to him what I could remember. There was one time where he had a metabolic panel done when he was just a year old so he looks through that test and see's where there's a test that tested his liver and bones, he said it was higher than he would expect it to be at that stage. He also wants Rylan to get a bone age scan which is just an x-ray of his left wrist and it will tell where his bone age is. He seems 99% sure that it won't be where it should be :( 

So Dr. Ross was trying to get Rylan seen by someone at Cardinal Glennon well for some reason they keep denying him because he already see's a neurologist there (what that has to do with his growth is beyond me) so he is trying his hardest to get him in to see someone at Mercy Childrens Hospital. Which may be the better of the two from what I been hearing. I just have to believe that God is taking care of this and that the right doctor for Rylan will step up and see him, so I am trying to be patient with this.