What A Year!

It's been a wild one! I remember thinking that 2012 was a doozy...little did I know what 2013 would turn out to be! Finding out about the SCT in March, going to Philly in April, coming back in August, going to Akron for most of September and October, and finally getting into the swing of things the past two months! Whew! We made it through and are enjoying Haddie every day. Praise God. Kate wrote a Facebook post that explains our doctors visit today:

Really good Doctors appointment this AM! No G-tube right now and we are allowed to remove the NG tube(feeding tube) from time to time at our discretion  Little Miss weighed 12 pounds 14 ounces and yesterday she took all feeds (except 3 AM) from the bottle. Biggest compliment from the Dr.... "You make fat babies, and that's what I like to see!" Yay! Haddie is finally chunky!!

So things are going very well. Haddie is growing and learning. We go to Akron on the 7th to get an EEG to see if she's still having sub-clinical (non visible) seizure activity. If not, we get to start playing with her seizure meds quickly. If so, we will start playing with her seizure meds at a slower pace.

We hope you all had a Merry Christmas and we wish you a Happy New Year. God bless!


Below is a picture of Haddie sleeping through the Browns/Steelers Game. She unfortunately lives in a house divided!

Seize-ure the Day

Like my creative yet stupid titles? Thanks. But hey, it gives you an idea of what this blog is about...seizures. The good news is that Haddie hasn't had any seizures for a long time! And the bad news is...well there really isn't any bad news. Praise God!

We took Hadassah to a Neurology visit on Wednesday in Akron and met her new and ongoing neurologist. To keep you straight because it can be confusing here's who we see:


Akron-
Neurosurgery- They deal with Haddie's shunt
Neurology- They deal with Haddie's seizures and medications
Palliative Care- Dont worry, it's not the same as elderly palliative care. They simply coordinate our visits and keep track of Haddie's ongoing progress

Parkersburg- Our Pediatrician
Help Me Grow- Works with us on Haddie's physical therapy and her speech therapy (aka feeding). They come into our home once or twice a month.

Marietta- Speech and PT
We go over once a month to get some extra tips and advice for feeding and physical therapy

So anyhow, we met with Neurology to talk about Haddie's seizure medications Haddie didnt really have seizures until the shunt infection. So we are not entirely sure that she still needs to be on the meds. Dr. Enlow, our new doctor, said that may be the case but he's not so sure. He would have expected the seizures to stop after the infection cleared but instead we had to up our dosage on the meds.

But he's willing to test this out. We come back on January 7th to do an EEG. They will take a look at Haddie's brain and see if she has any signs of seizure activity. If she does not we will go with the "aggressive" plan. That plan would be to take away one of her meds and see how she does and then take away another med in a month or two. If she shows signs of seizures then we will go with the "conservative" plan. This plan will be to slowly tweak her meds and see what is going to work best for her over the coarse of a few years.

Haddie is a lot more alert these days. Our concern is that Phenobarbital could slow down the speed of her development. So either way we will see if there is a better option out there for her.

The other cool news is that Dr. E tested Haddies reflexes. When he pressed on the bottom of feet her feet shook a bit. He said this was due to Cerebral Palsy. We knew that Haddie could have this from the get go. He said though that he would expect someone with CP to be a lot tighter in her hands, arms, and legs...and Haddie is very loose. That was encouraging to hear because every day Kate and I do stretches with Hadassah to keep her loose....so it must be working.

3 nights ago we moved Haddie out of our room and into hers. She seems to be doing pretty well. All in all she is doing great. She is taking most of her bottle and she weighs over 12 lbs now! We meet with our doctor on Dec 30th to determine whether or not she will be getting a G Tube or if she can eat on her own without any tubes. We are hoping for the 2nd option.

Thanks for your prayers and please keep them coming. Pray that Haddie continues to eat well and that they see no signs of seizure on the 7th. God is good no matter what. We hope you all have an excellent Christmas and a happy New Year!!!!

7 Months

Hard to believe it has been 7 months! Haddie is growing and learning every day. We had a good doctors visit last week with our pediatrician. Haddie was up to 11 lbs 2oz. The doctor said she was gaining weight well and was happy with the amount she was taking through her bottle. We will meet with him again on Dec 30th to see how she's doing and then decide on the G Tube. If she's doing good on the bottle she may not need the G Tube...which would be great.

It's really cool to see Haddie making little steps. She seems to be getting stronger neck muscles and can lift her head a little bit better now. She also is getting better at tracking objects with her eyes.

The best feeling is that Kate and I are finally getting into a routine. We feel settled. We are comfortable leaving Hadassah with family and friends on occasion. Last night Kate and I went out on a date to grab some dinner and watch a movie.  What a blessing. It was good to just be a husband and not worry about being a dad for a little bit. Kate and I will make that a monthly practice...and I encourage parents out there to do the same. It really was an enjoyable night.

We are very thankful for your continued prayers. Here's a cute video of Kate's family and Haddie on Sunday afternoon:

Snoozin

Thankful

I think Thanksgiving will be a little different this year. We are hosting Kate's entire family and my entire family tomorrow. This isn't our first time doing this. The tables are set up, the tvs are ready to show some football, and the turkey is brining as I write. But as I look around the rooms, I noticed something different this year. In the large family room there's a pack-n-play besides the table. In our bedroom there's a bassinet. In the garage there's an empty box where a stroller used to be. In the family room I'm sitting in now there are two swingy, rocky chair things(yes, that's the technical name for them) and a stack of diapers and burp cloths.

And upstairs in a bathtub getting washed up is a Haddie.

And for that, we are extremely thankful.

Because you and I both know it didn't have to turn out like this. At several points God could have done something else. But for some reason I'm not quite sure of, God let us keep our Haddie. God chose this path for us. And hard as it's been at points, it's all been worth it. She's here. She's home. And that is still hard to believe.

Haddie has been doing well after her last surgery (well, the 2 in 1 day that is). She has woken up more and her eyes seem to be tracking better. We are continuing to work with her to get her better at taking milk from the bottle.

Please specifically pray for that if you could. By the end of December our doctor wants Haddie taking 720 mls(24oz) by bottle a day. If she isn't there, he wants to put in a G-tube. This will require a surgery and a tube placed directly into her belly. Apparently this has less of a chance of infection as her NG feeding tube has now. We really want to avoid this if possible. But Haddie doesn't always cooperate. Please pray that she does!

God is good. We hope that you all have a very good Thanksgiving. I think we all have a lot to be thankful for.

Here's a video of Hadassah before bed the other night: https://www.facebook.com/photo.php?v=534997918832&l=2594890134536596

Surgery Thursday

We have gone almost 4 straight weeks at home and it's been a lot of fun. But we knew that there was a good chance Hadassah would need surgery again. We knew it could happen at any time and so we tried to enjoy every day at home with Haddie. Today's appointment revealed that Haddie's 4^th ventricle has sealed itself off again. We had thought that Haddie had been acting very sedated. We also noticed that her eyes barely opened and when they did open they were not together. We thought it was probably the seizure medication but today’s CT scan revealed what most likely is causing this.

They will go in on Thursday morning at 8:30am and attach another tube to her current shunt and run it to the 4^th ventricle. That should produce quick results and we will know if it’s the ventricle or the medication that’s causing Haddie to be out of it. Either way it will be good for her.

This surgery is not very invasive and recovery time could be about a day. Hoping that’s the case this time.

Kate will head up tomorrow night and her mom will be with her. I will be staying at home and getting ready for the Belpre Youth Rally.

Please say a prayer for us on Thursday. God is good. We are in good spirits and are hoping this surgery will give us back the wide-eyed, feisty, little girl we knew before this whole shunt issue came around. If not, we are still very blessed to have this sleepy little gal who is still a miracle. (As I wrote that last line she gave me a grunt…guess that means she knows she’s a miracle!)

3 Weeks

Tomorrow marks 3 weeks that we have had at home with our Hadassah...and what a joy they have been! We are thankful for every day that we have with her. You truly know the blessings of everyday life with your baby when you've spent 3/4 of her life in a hospital.

Haddie has been doing well. She has weekly doctors appointments both with Dr. T in Parkersburg and the neurology team and neurosurgeons in Akron. On Tuesday she weighed in at 10 lbs! Neorosurgeons are currently happy with her shunt but will take a CT scan on Tuesday just to make sure things are still okay.

Haddie has been doing awesome with her bottle. She still has the feeding tube and we feed her every 3 hours so she can gain weight. We always try using the bottle first and whatever is left we put in through her tube. Yesterday she crushed it. Her full feed is 75 MLs- 9AM she took 50mls; at noon she took 47 mls; and at 6PM she took the whole bottle; and then at 9PM she took 51 mls. Like I said, she crushed it. Which means we are moving closer to getting that tube out.

The only main concern we have is Haddies' alertness. She used to be able to track you with her eyes and was alert more of the time. We think her seizure meds have put her into a sleepy state. She does wake up some but isn't nearly as alert as she used to be. We plan on talking with neurology and seeing if we can lower the med levels. Haddie has been seizure free for 2 weeks now.

Help Me Grow has been here a couple of times and today one of the ladies hit the nail on the head regarding our biggest problem. She said it is very easy to just do custodial care for Haddie. Since Haddie doesn't respond much to us right now...she said it is tempting to just take care of her and not work with her on stimulation. That truly is a challenge. Kate and I are trying to "play" with Haddie more...but it is hard when she doesnt really play back. It's also hard because Haddie seems to have lost a little bit of the alertness she once had.

But we are going to do our best. We know she can do amazing things. She already has. We both think she will get back to where she was before the shunt infection and seizure meds...and she will go far beyond that. The key word for us is patience. You would think we would have learned that by now, haha! God is good and I'm glad He continues to teach us.

Enjoy some pics: Bathtime with naked Haddie

 Haddies first time with snow...she tried to lick a few flakes!

Record Breaker

Well we are breaking records left and right. We have had Haddie home for 11 days...and it's looking like we will get a few more! We took her to Akron for a checkup...and they didnt keep her!

We met with neurosurgery and they checked the shunt. They seemed to think everything was fine. Our 2 concerns was that she had a high heart rate last night and that when we pump her shunt 30 times every 3 hours it doesn't fill up well at the end. They were not concerned with the heart rate and said that we might only need to pump the shunt 10 times every 3 hours rather than 30. So they sent us home! We have to go back in a week for follow up. O and she gained weight...she's up from 8lbs 10oz last week to 9.3 this week!

God is good. He always has been. We are just thankful for every single day we have at home with her. She probably will have to have the shunt valve replaced at some point but for now we will just enjoy our Haddie. And keep breaking records...and expectations.