Sunday, November 15, 2009 10:21 AM

 

Well we’ve made it through several colds already (or one really long one,

who knows). and NO ear infection! Seems like the tubes are doing their

job! yippie!

Still having issues with seizures, but that could be in part to her having

lowered resistance because of the cold. Her body gets stressed when sick

– and that makes her more prone to seizures. (and as a sick joke – the

increase seizures lower the bodies ability to fight any infection, so she

can’t get well as easily, and continues to have more seizures – its a horrid

cycle).

School is going great and Rebecca is doing AWESOME with her gross motor

skills. She is learning to walk up stairs (she ALWAYS has someone right

behind her at all times), and EVEN going downstairs. Now all I’ve ever

seen going downstairs is resisting, but today I let her do it her way,

meaning leading with the foot she wanted to each time. I kept her left

hand on the banister, and held her right hand, and stood in front of her the

entire flight of steps (I went down backwards). She went down the ENTIRE

flight, just like a big girl. I couldn’t believe my eyes.

In medical news – she had her MRI this past week – all clear. And even

better, Dr. G said we don’t need to get another one for ONE WHOLE YEAR.

this also means we can get the port taken out, since the main reason we

left it in was so she could have easy access for sedation for MRIs. Yeah, it

means another surgery, but its another huge step in her overall health.

The port makes for super easy access when she needs an IV – but its also

a huge infection risk (each time it is accessed, not in general – its totally

closed under the skin).

Rebecca is our little girl on the go – right now she is running around the

house from toy to toy (each one going right into the mouth). But she

doesn’t stop. Eventually she will just crash – but that is how she goes.

Full steam ahead until she just runs out of energy. She sleeps for a while,

wakes up ready to go again and the cycle repeats.

Thank you for all your prayers. continue to pray that we have success with

the VNS and will be able to taper some of her medications.

 

 

Tuesday, December 1, 2009 10:12 AM

 

3 years ago today Rebecca had the port put in to start the Chemo for the optic glioma. She got Chemo once a month for 13 months. We left her port in so that she could have easy vein access for all the MRI’s she would need (and any other time she would need an IV). On December 28th she goes in to take the port out!

I can’t believe 3 years ago we were starting Chemo for our baby girl. Going up onto the 4th floor of the CHC of Duke – where all the really sick kids are. All those little faces peering out from behind the masks. Masks, because those kids have no immune system and any germs anyone else have could be very dangerous to them. Such adorable little faces – but the ones that make you grateful for what you have.

We met so many wonderful people. Some have won their battles, some have lost their battle. But all taught us many wonderful life lessons. And some of those children I will never forget (Especially Mackenzie “Z” – her memory will live in my heart forever).

Thanksgiving is over – but the time of year to be thankful is not. Hug your loved ones. Whether you face medical and or developmental challenges or not – there are blessings to be cherished. There is HOPE to be found.

Three years ago Rebecca was getting Chemotherapy and David and I were scared out of our minds. Today – the tumor can’t even be seen on the MRI and she is now going to go for her MRI once a year. Once a year! That is a huge milestone for kids with NF.

This Christmas she is walking. She is smiling and laughing. She babbles quite a bit (no words – but she is “talkative”). The VNS magnet stops the worst of her seizures. So there is HOPE that as we work her up to higher settings it may prevent these seizures. But we must go slowly with building up her tolerance to the pulse. I know I probably don’t have that worded correctly – but hopefully you get the idea. Go and hug a family member today. Pray for a loved one far off today.

Know that Rebecca and I love all of you and pray for you often.

 

 

Tuesday, December 22, 2009 10:39 AM

 

Rebecca continues to do really well. Sure she has had cold after cold – but we’ve been told that comes with her age. So does her “sharing” her germs with Mommy and Daddy. Thankfully we are all getting over this latest cold. The good news is though, that the ear tubes seem to be doing their job and she hasn’t gotten any more of those painful ear infections. Praise God! Another praise is that the VNS seems to be doing some good. The main benefit of the VNS is improving quality of life. So we are able to use the magnet to swipe over the devise to stop seizures. Even when we don’t use the magnet, it does seem her seizures are overall shorter. The only sad thing is that the VNS seems to have no affect on the cluster of head drops she has. These are the ones where she has many very small seizures in a row – upwards or 50 or more (we don’t count the individual seizures only the entire event). I talked to her Neurologist about this and we agreed we could switch her to a different seizure medication in the new

year but first we would wean her off one of the less effective medications first. The “new” medication is one specifically approved for kids with Lennox-Gastaut and for drop-attack type seizures. Her doctor agreed this drug is a logical choice to try to hopefully stop the ones the VNS is not helping. (He seemed to appreciate my own research in the matter, something that I could tell used to offend the previous doctor).

I am excited for Christmas. My immediate prayer is that Rebecca would be able to enjoy the wonder and magic of Christmas without having seizures. So often all of the over stimulation triggers seizures. Just once, I pray the Lord would bless her and allow her to enjoy the Holiday like a normal

child. I want her to be able to rip open her presents, to play with her toys and to have FUN on Christmas and not worry about those stupid seizures. Just for those two days (Christmas Eve and Christmas Day). I know the Lord has the power to heal my Child. I pray it is in His will to grant her

so. and I have the same prayer for all of my other young friends afflicted with Epilepsy. Health to enjoy the Holidays.

Have a Blessed Christmas everyone. May 2010 bring you Healing.

 

Monday, December 28, 2009 3:31 PM

 

Christmas was pretty good! Rebecca had a great time and was really interested in her presents. She had a bunch of seizures Christmas morning and had to be given diastat, but otherwise had a good time.

This morning she had her port taken out. We were at Duke bright and early and were home before at 9:30 (with most folks on vacation still many people were probably still home in bed). Rebecca is doing really well today post surgery.

 

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