Happy Heart News

Marleigh had her follow up with Dr. Ferry (Cardiologist) last Tuesday and we got great news! Her heart is in perfect condition. All the thickening that happened due to the high blood pressure has reversed. So we are thrilled!!
Here is a photo of her EKG.



Here she is with Dr. Jenna Roberts. We are in her office at least once a week and the whole staff at Pacific Ocean Pediatrics has been amazing. We are very lucky to have such talented people looking after her.


We also met with Dr. Kornblum (Neurologist) last week. We talked about her EEG results and he said that after seeing her in person he was suprised her EEG reading wasn't better. The great news is she is not having any seizures. The not so great news is that her EEG is still abnormal so we need to stay on the Zonegran (anti-seizure meds) and keep an eye out for anything that might be a seizure. If everything is still going well in 2-3 months then we'll be admitted to the hospital for a 48 hour video-telemetry EEG. This will give them more data so we can make sure there isn't something like a non-symtematic seizure going on and give her brain a little more time to develop and possibly normalize a little more.

She is continuing to develop motor skills and we are confident she will be doing some intentional rolling soon. She is very close to sitting up on her own and is beginning to play with toys by moving it from right hand to left - which is a milestone. And she is really enjoying her solid food experience, but only the veggies! I keep trying to get her interested in apples and bananas but she's just not that into it. She is great at playing with the spoon and making a great big mess! I love it when she does completely normal things - it is adorable.

EEG Results

2/4/09 UPDATE
Hey there - we got some unnoficial results from the test. It is not bad news but I wouldn't put in great news category either.
We're meeting with Dr. Kornblum (neurologist) on Monday so we'll have more info then but here is a quick summary.
It looks looks about the same as last time, maybe better. There were no seizures, but there are still significant abnormalities that are on both sides.
We don't fully understand what this all means and during our appointment I'm sure we'll talk more about next steps.

The good news is, she is doing really well developmentally. By this I mean, that even though she is behind, there is definite progress week to week. And she has the cutest smile :)
Hugs,
Erin

PREVIOUS MESSAGE
She did really well during the EEG and based on what the technician said she may have a normal reading. We are still a little concerned because she has a slight tremor in her hands and feet. So far no one knows why.

Her blood pressure is still high (120/70) which is 90% for babies. So it has come down significantly but still needs to be lower. The Amlodipine does not seem to do much for her but we are still giving it to her twice a day.

On Feb 9th we have a Nerology appt and on the 10th we have a Cardiology appt. So we'll know a lot more after those visits.

For her 6 month check up (yesterday) she is doing great and only a little bit behind developmentally. She is not sitting up by herself yet or doing much rolling. Her OT says she is progressing and will hit those milestones soon.

Here's a photo of Conrad and Andrea. Even though attaching the leads is a bit traumatic, Marleigh has decided not to hold it against them.

Marleigh's Latest EEG

Cute Laughing Mar

Happy New Year, Happy News

We hope that everyone had a lovely New Years Eve. We spend the evening with our very good freinds, just a few blocks from our house. We had a terrific dinner and played silly board games and even had a little champagne!



On January 13th we gave marleigh her last shot of ACTH. In the movie businesss when you film the last shot of themovie the Martini Shot. We celebrated just long enough to not jinx it. She's been seizure free and we are hoping it stays that way.



Now the plan is to keep an eye on her and potentially start to decrease the other anti-seizure medication. We'll be doing another EEG in a few weeks to see if the ACTH helped to normalize her brain waves. In the meantime we are dealing with her high blood pressure. She is now on Amlodipine 2x a day as of her Wednesday appointment it is finally down to an acceptable level. We have a follow-up appointment with the cardiologist in February. If all goes well, then her heart will start to loose the excess thickness and return to normal.



She is meeting twice a week with infant development specialists. Here is a photo of her with Lindsey, her OT. We are excited because she is doing much better supporting her head and reaching for toys. Just this week she started banging toys on her tray and even rolled from her tummy to her back!! We are soo excited about her progress! And so is she ;)

Hospital Holidays

Happy Holidays to everyone. We are happy to report that Marleigh is doing well after another stay at the hospital. This time we were at Cedars-Sinai (which, in case you didn't know, is where Julia Roberts had her twins *Fun Fact).

Marleigh has had really low sodium because of the new blood pressuer medicne she was on (Lasiks). We thought that she was doing well, but we knew that there was a chance this diuretic would pull her electrolytes from her system. So she had a blood test 1 week after she started the drug. The result was that her sodium and chloride was very low. The Drs all thought it would be OK if it did not continue to drop. Unfortunately it did drop, much more and more quickly than we anticipated. Suddenly we were packing and heading into the hospital. When you loose sodium it can be very bad for your system and even cause siezures. Because she lost it slowly over 2 weeks her body had become accustomed to less salt so they couldn't add it back quickly, it had to be slowly raised over many days. We found ourselves spending 3 days in the hospital, mostly just hanging out in the room. Keith and Dylan stopped by during the day and there was a cot in the room for me to sleep in at night.

Since we missed Christmas, we had it a day later - Dylan didn't know the difference, thankfully it is easy to keep the fantasy alive with a three year old. He doesn't even question when the gifts from Santa are wrapped in the same paper as the other presents. And he didn' question us when we returned one of Santa's gifts to Toys R Us and exchanged it for one that worked. We had to take at least one photo of Marleigh in the hospital with that cute Santa hat. Especially since she didn't get a photo with Santa.

She has a terrible cold, they x-rayed her chest while we were at the hospital and thankfully she is not developing pnemonia. She does have an ear infection and it looks like she may have started teething. Needless to say her mood has not been the sunniest - but hopefully she'll be feeling better in a few days.

We are now on a new BP medicine (Amlodipine) and she is doing very well now that we are home. We have another blood test on Monday to make sure she is in good shape and only a couple more weeks of the ACTH. So far so good. We can only hope that the seizures do not return.


The firefighterswere bringing in gifts to all the kids in the hospital. They gave her a hippo stacker. And I gave them a hug!


Marleigh and Daddy at Dylan's Holiday Party. I'll post something from this on the other blog.

Holiday Update

Hi everyone! Marleigh has been a regular at our pediatrician. They are fabulous and soo sweet to her. I have a lot of good news to report and a few minor setbacks.

First the happy update:
Marleigh has had no seizures since October 3rd when she started the ACTH treatment. Yay!! She has been getting an injection every day until this week - she now only gets poked every other day. We finish up the last shot on January 16th.

Our neruologist had us discontinue the B6 - she really hated it, it is nasty (I felt obligated to try it since it was just a vitamin.) It is supposed to be swallowed whole but Mar had to take it crushed and dissolved in milk. Yuck. It was a real pain forcing her to suffer through it every night so we are happy that we can skip it! And while I know B6 is just plain good for brain power, I don't think it had any effect on the seizures.

Marleigh has had the WORST diaper rash I, or our Dr has ever seen. It would not clear up and continued to get worse until she had 3rd degree acid burns (yes, her poo was literally burning her bottom) over 50% of the area covered by the diaper was open bleeding sores. Yes, OUCH! We have been battling it for over 6 weeks. I have felt a little like MacGuyver with all the different ways we have tried to keep the poo off her skin and the medicine on it without putting tape over open wounds. It would be comical if she wasn't feeling so much pain from it. But now thankfully it is healing - and I'm sure it is no coincidence that she is smiling a lot more!

Now for the not so happy news:
The ACTH in a small number of patients can cause blood pressure high enough to require additional medication to treat it. Our Nerologist said he has never had a patient on BP meds, so of course Marleigh has to be the first. Unfortunately, the first medicine (Enalapril) did virtually nothing to lower it, despite daily (yes daily) visits to our pediatrician and regular increases it remains high.

Last week we had to go see a cardiologist and have an ECHO and EKG which confirmed that her heart wall is thickening because it is working so hard to pump her blood. Not good. So now we have started another BP medicine called Lasixs (Furosemide) a diuretic. It is helping to bring her BP down but we had to have blood drawn yesterday to see if it was lowering her electrolytes too much - and of course it is. So now we are in a bit of a conundrum. On Monday she'll have her BP checked again and if it is staying in a reasonable range we'll draw blood again to see if she is still in trouble with the electrolytes - then we'll have to decide what to do. But if her BP is high, we'll just take her off her current medications and try something else.

Thankfully, the woman at the lab did an amazing job drawing Marleigh's blood. She got it on the first try and somehow even got her to stop crying. I used a numbing cream but it seems like it still hurt to get poked. Or maybe she just didn't like me holding her so tight - you have to keep her still so she doesn't pull out the needle.

Anyway, we are happy for all the good things that are happening and hopeful that we can come up with a good solution for the other bits.

I'll check back in soon, when I have new info. We are really looking forward to the end of the ACTH!

Hugs,
Erin