Just passing through...

So yesterday I had made an appointment for Landon to get checked out again. He has not been sleeping, very fussy, and still no eating or drinking. My worry was maybe he had an ear infection or something else going on. I was considering canceling it, but decided to take him. His lungs sounded pretty good, but his pulse ox was low. So they put him in the hospital for some testing. So first thing they come to cath him, and he has nothing in him, so it was a waste. Then iv therapy comes in(which I love, not) the first try she got it in his hand, and reached for something, and pulled it out. UGH! So they move to his other arm, and dig around, and finally get his vein. The thing that gets me about the people doing the needle sticks, while Landon cries they say your fine. No sympathy for him at all! He doesn't understand and it hurts! I want to scream at them to be nice, but I just bite my tongue. So of course if something can go wrong with Landon it does. They had to cath him a second time, and the bloodwork they took clotted. While they came in for the new blood draw, I noticed ladons fingers(with the iv) looked purple. I asked the new iv therapist and she was like yeah ask your nurse. REALLY, you can't help me? I'm sitting here alone, and you just stand there? So I lay him down and run out for the nurse. She comes running in to check. Oh no, the bandaging wasn't too tight like I thought, his vein burst and his tissue was full of fluid! His poor little arm looked like a small elephant leg. And he of course was crying in pain. Now I know it wasn't anybodies fault, it's just his luck. So finally after all of that and a chest x ray, we were told we could go home. His pulse ox was still low, but we should monitor him and call with an update. We are so glad to be home, and Landon is also!

It's been a few days since a seizure, which is amazing!! Woot woot!

Praying for all of you!

Xoxo,
Heather

Football?

Breathing treatments every 4 hours-check, NG feeds every 4 hours-check, Tylenol every 6 hours-check, Ora gel 4 times-check, 6 medications-check, 3 precisely measured meals-check, blood sugar and ketones measured-check. I really wish my main concern could be if a football team won. I know to some people they act like it's life or death, but they clearly have no idea. It's a GAME!(not to mention I'm a Browns fan, and proud of it! Brent is a crazy steelers fan)

Anyways, on a more important note, Landons croup had gotten worse. I called the doctor and he sent us home with at home breathing treatments. Joy, more medical equipment, but I will do whatever he needs. We got it yesterday, and I must say he is significantly improved! I'm so happy! Between the 4 huge teeth coming in, and the croup, it's been a rough week. Last night he did sleep 5 hours in a row, and I was very thankful! I'm hoping tonight is a good night. I really could use a full night of sleep.

I'm of course praying for all our friends!!!

Xoxo,
Heathet

Croup

So the last few days have been pretty rough here. Landon hasn't been acting himself at all. I thought teething was the culprit, until he started "barking." I only had to hear it once, and we had an appointment at the pediatricians office. Sure enough he has croup. In this house we don't let things get any worse. We try to be proactive. The tough part is Landon can't be on a steroid, due to his prior subdural hematomas(bleeding on his brain). And they would rather not use an antibiotic since he spent almost 3 months on a super high dose for the c-diff. They did a special breathing treatment in the office, and it seemed to help. His cough hasn't gotten worse, but sleeping still seems to be tough. He will sleep 5 minutes only to wake up, and start to fuss. He seems better if I hold him all the time, which makes for a sleepy mommy. I guess the laundry and cleaning will have to wait! Darn, lol

As far as seizures, he continues to have about 1-2 clusters a day. Although I think the zonogram is helping! They seem less intense, and sometimes shorter in length. I'm praying once we add the felbamate we see seizure freedom!

Landon is almost done with the diet. He starts a 1:1 ratio tomorrow! Next Saturday we can start feeding him real food...words can't describe how great that will be! I am praying hard that he becomes interested in liquids soon! I'm ready to throw a "bye bye tubbie"
party!

Praying for all our friends!!! (I miss talking to you all, hopefully we can change that soon!)

Xoxo,
Heather

Goodbye Keto Diet

Landon is now down to a 3:1 ratio, and is eating his food again!!! Yahhhh! I'm hoping this is good news that he may start drinking as soon as he comes off the diet completely! He will be down to a 2:1 ratio Saturday, so say an extra prayer that he starts drinking again! I can remember wanting to start the diet, because it was going to be our miracle. Now all I want is to run, as far away from the diet and as fast as we can! Things have always been tough in our house. From the daily seizures, and struggling with Landon to be a normal baby. But God decided to make me realize how Lucky we were when we started the diet. Things are crazy and hectic with the diet, under normal circumstances, but throw in a feeding tube and refusal to eat...and it gets overly crazy! I hope things return to our "normal" asap! We had to try the diet, and wouldn't change it, but I'm not sad to say goodbye!

Leaving the diet means more drugs. Landon will soon be back in Philly and we will be starting Felbamate...if you know anything about it, it's scary. Unfortunately, we have to try it. So we will say more prayers than now, and pray Landon doesn't have any of the awful life threatening side effects. He is still having about a seizure a day. But he seems to be recovering quicker after them. He is continuing to make slow progress. He has been overall happy for the last few weeks, other than some teething issues.

We are thinking and praying for all of our friends!

Xoxo,
Heather

Bitter sweet times

So it never fails...I always get sad after Christmas! Between all the excitement of spending time with everyone, and then it's over. Back to reality, boo! And we aren't having the best days with seizures around here. Things seem to be getting out of control. We are seeing a big increase, and aren't sure why? Landon has been on zonogram for almost a week. He goes up on the dose tomorrow. I'm not sure if it had anything to do with all the seizures or not? I'm finding it harder to decide these days. We go back to Philly next week, so I'm trying to wait to see what they say. I believe Landon will be done with the diet, and I'm praying his GI goes back to normal. He still isn't drinking, and isn't eating well. It's pretty much a battle each meal! No fun at all. Especially when his food is his medicine. On a good note, he isn't throwing up daily!!! That's exciting, so I would say the prevacid was a somewhat success. Also, Landon has been soooo happy, chatty, and all smiles! This always makes me happy! He continues to make slow progress. As all of you, I wish I could wake up and things be fixed! Too bad it isn't that easy!

Landon had a great Christmas! Actually we all did! I hope you all did as well! Prayers as always!

Xoxo,
Heather

Merry Christmas!!

I wanted to make sure I wished everyone a very merry Christmas!! We are really excited, and hope Landon enjoys it! We received a early Christmas present...a negative for c diff! It's definitely good news, and hopefully takes Landon in the right direction. We go back to Philly the beginning of January. We will discuss coming off the diet, and starting felbamate. He started zonogram on Tuesday, just to hopefully send some help until we get to philly. Our dr wanted to wait for felbamate until we are off the diet, being as they both compromise the liver. Maybe god will grant my wish and let Landon be seizure free with zonogram! Landons seizures have been getting out of control...so we hope to see improvement!

Thinking an praying as always!!! MERRY MERRY CHRISTMAS to all!!!!

Xoxo,
Heather

16 months old today

Today is Landons 16 month birthday! I try to recognize each month for him. Sometimes we watch the video from his birthday, or look at pictures. It's happy and sad all at once. Other than celebrating today, I'm continuing to prepare for Christmas! I'm really excited to see how landon reacts! I think he will enjoy it(I hope)!

We have another busy week of therapy, doctors appointments, and phone calls needed to be made! Landon has been on his prevacid for 12 days tomorrow...and still no bottle. He will drink a little liquid(4 ml) if I sprinkle it in his mouth. Def a tiny improvement, but not where we need to be! It looks like the diet may soon be a thing of the past. We also have to have him tested for c diff this week.
Hopefully it's negative!

We still continue to see almost daily seizures, and the odd movements continue. Please pray our next move is the answer! We have been told felbamate is our next step.Anyone have any experience with it? I'm nervous about the extreme side effects. But we need to try it with hopes of it helping his seizures!

I'm asking Santa for three things this year...negative c diff, and Landon drinking again, and seizure freedom...I don't think it's unreasonable?

I'm Thinking and praying for all of your Christmas wishes to come true! We love you all, and wish you a Very Merry Christmas!

Xoxo,
Heather