Pretty Good News

We talked with Dr Jordan and Dr Gailloud today and the news is about as good as it could be given yesterday's findings. The aneurysms are deemed stable and their fusiform shape is less prone to rupture, so the game plan is to leave them alone and follow them with MRI studies every 6 months. As long as they don't start to grow, they can be left alone indefinitely.

The same is true with the fistulas. At present time, they are "benign", meaning they are not likely to cause problems in their current condition and can be left alone and tracked over time. They are not visible on an MRI so as long as they stay that way, they should be fine and not cause problems. We will also track them with an MRI and no visibility = good news.

So the game plan is to stick around until Monday so that Amanda can have blood drawn for clotting tests on both Friday and Monday. They have to take so much blood that they can't do it in one draw, so they split it up into two and left a few days in between for recovery. Her blood counts were excellent in the blood draw before the angiogram but she did lose blood after the angiogram when her artery bled so we are giving her a few days to recover from that before the first draw and in between draws just to be safe.

The doctors and nurses have been excellent to work with here and seem to be truly interested in helping Amanda. We are blessed to have such good doctors at each place we go. Dr Wooten from Raleigh Neurology has been wonderful and our team of doctors at UCLA are all wonderful as well.

We are also blessed to have wonderful family and friends like you. Thanks for thinking of us. We will continue to keep you updated. Our current plan is to head for Wilmington on Monday, as it will take a week or more for the results of the blood test to come in. And for the record, it is nearly impossible to keep a 4 year old still and quiet! Have a blessed day.

Susan

Mixed News

The angiogram is done and the procedure itself went well. I have to admit though if you ever want a tough task, try to get a 4 year old to lay still for 6 hours and then to stay calm for another 48. The angiogram showed that Amanda has 2 aneurysms, the one they expected which was 5 mm and a very small 2 mm aneurysm. They are right next to each other, and are called fusiform or "psuedo aneurysms." The good news is that they have been there a few years and appear to be stable. The aneurysms are also a shape that has a lower rupture risk.

The doctors also found some "surprises" while doing the procedure. We knew something was up because the procedure took a lot longer than expected. They found several dural arteriovenous fistulas and dural sinus fistulas. On a scale of 1-4 with 4 being the worst, Amanda's were all toward the 1 range, so that was good news. The presence of these problems may indicate an underlying clotting disorder so we will likely be doing additional blood tests this week. We won't know for sure what the plan is until we hear again from the doctors. They meet today and discuss her case as a group. We will know more after they meet in terms of what this all means and what we do moving forward.

Sorry for the late posting. We got back after 11pm and then had to try to keep Amanda calm and still so the artery wouldn't reopen. She was absolutely wild so it was quite a task. We finally got her quiet sometime after 1am. We will let you know when we hear anything regarding the next steps.....

Thanks for the prayers. God Bless,
Susan

A Note From Dana

Amanda came through the procedure fine today. She is still in recovery, but should be released late tonight.

Susan and Dan will be meeting with the team of doctors tomorrow to determine the next step. Thanks for your continuing prayers.

Dana

Angiogram Tomorrow

We met with the pediatric vascular neurologist today. It went basically well but it is sometimes hard to hear what they have to say. The doctor was nice but it is still hard to discuss everything. She told us that aneurysms in kids are very rare. At Hopkins, they only see about 2 kids per year with aneurysms. So Amanda's case is super rare - to have a kid with a previous hemispherectomy that has an aneurysm. At UCLA, they told us she was the first kid to undergo a hemispherectomy and get an aneurysm.

The doctor also told us that the aneurysm she has looks like a widened blood vessel and not a cherry. The definitive test will be the angiogram tomorrow. Once they see the aneurysm up close, they will know a lot more of how to move forward. Amanda is super silly again today. At the moment, she is giggling uncontrollably as Nana is trying to get her to drink milk. She continues to be such an amazing, silly, and fun kid.

As I mentioned previously, the angiogram is at 1:00 tomorrow and should be finished by 2:30. We will then be in recovery until probably 8:30 or so. I will try to post something tomorrow night if possible.

Thanks so much for all the prayers for Amanda. Prayers are the strongest medicine.

God Bless,

Susan

A few thoughts :-)

Last week, I had the opportunity to put some philosophical thoughts to paper when I wrote something for the paws4people graduation ceremony. I thought I would share an amended version of some of those thoughts here. As you know, the past 4 years have been a wild ride for us filled with 99% blessing and 1% stress. Some of the most important blessings have been:

1) Getting the privilege to be parents to our amazing little angel Amanda and her wonderful big sis Katie. Katie is such an amazing big sister to Amanda and Amanda just adores Katie. Amanda is such a truly wonderful, fun, tough, silly, loving and resilient kid who is tough as nails and sweet as sugar. Her innocent, pure, and radiant spirit shines through in all circumstances. We are so grateful to have 2 such wonderful children in our lives.

2) Gaining a much deeper understanding of the terms “unconditional love.” Both of our girls have taught us to understand in a deeper way the meaning of unconditional love. It is indescribable how much you can love a child and how much they can love you back. We have also grown closer as a family over the past several years. Unconditional love has also been demonstrated to us by all our family and friends who have supported us through thick and thin and by the inmates and personnel from paws4people who work day and night to improve the lives of kids like Amanda. My parents are a prime example of unconditional love, as they basically gave up their retirement to help us out with Amanda. Most recently, they packed up all of their belongings in Florida early to drive up to Morgantown and now Baltimore to be with us. They have basically been living with us in a hotel for the last two weeks. They deserve a medal for all they have done to help support our family and keep us functional. Thank you all for everything!

3) Getting to meet the many wonderful people that God has sent our way. Many of you have made an indelible mark on our lives. Everyone at the paws4people organization has become like family to us. Thank you so much Terry, Kyria, Heidi, Candace, Karen, Ashley, Ms Matel, all the inmates, etc for all you have done for Amanda, ELLIE, and our family. Thank you all for seeing Amanda for who she is and for seeing the ability and promise in her. Thank you for investing your time and energies to make Amanda’s life better. Thank you also to the many people who have supported Amanda, ELLIE, and our family over the past several years. You are all amazing and we sincerely appreciate all of your efforts and generosity.

4) Learning to enjoy every moment of every day and not to sweat the small stuff. Every second we get on this earth is a gift from our heavenly Father and we are truly grateful for every moment. We are grateful for the all of the wonderful experiences of the past and present and we eagerly look forward to those of the future.

5) Learning more about the meaning of life and our purpose here. Amanda has shown us that we are meant to serve other people and to help make their lives better, much like many of you have been doing for our family over the past several years. Often it is in serving others that you find yourself. Every member of our family is a better person for knowing Amanda and learning the lessons she has already taught us and will continue to teach us in the future.

While we are in our 1% stress mode at the moment, we are still tremendously blessed by so many things. We know there are many people around the country praying for our sweet, beautiful little girl. We feel added strength from all of those prayers. We are approaching the days ahead with the “peace that surpasses all understanding” and the comfort of knowing that God has a perfect plan for Amanda and our family. We have received some good news in the past few days and we are confident that Amanda will come through the procedures well and will continue to bless our family and the lives of others for years to come.

God Bless,
Susan

Pre-Op Appointment Went Fine

The pre-op appointment went fine today. They just basically collected a bunch of information on Amanda and her medical history so that the anethesiologists would be well prepared to handle her case on Wednesday. We learned that the angiogram is scheduled for 1pm on Wednesday. The procedure should be finished by 2:30 and Amanda will be required to stay at least 6 hours after the procedure. We are praying that they find some good looking arteries when they go in there and that they won't have any need to do surgery.

We also have the appointment with the pediatric vascular neurologist tomorrow so we will let you know how that goes. We are especially looking forward to tomorrow evening as we will be getting a nice visit from Terry Henry from paws4people foundation. Thanks for the prayers and support.
Love ya.
Susan

A Quiet and Silly Sunday

We had a quiet day today, aside from Amanda being her typical silly self. We went out to the suburbs of Baltimore to get groceries and get out of the hotel room for a while. We also hit the hotel pool briefly and played Uno Attack tonight as a family, a game the Meek family got us hooked on.

Amanda has been totally full of beans today. She has been soooooo happy! It has been wonderful. I think she is really enjoying having so much family around to play with and get attention from. I captured some of her silliness on video today so once I get the video processed (it is one of those disposable ones), I will post some of her antics to the blog. Her new throwing skill continues to progress. She can now throw up to 7 or 8 feet when she really gets the release right. She is quite humored by the sound of whatever she is throwing bouncing off tables, walls, etc.

It hit home a bit today that we really missed the service dog graduation. I wish we could have gone but Amanda's health comes first and no one wanted to risk driving up in the dark after the events of the last few weeks. From all accounts, graduation was quite an amazing event. We got to see great pictures from Kim Meek, Grace's mom, and also got to hear play by play accounts of all the wonderful events from Aunt Is, Carol Sullivan (who was also nice enough to drive over to Baltimore to see us yesterday) and Candace. We even got a very nice posting from the Coffindaffer family, the family that first fostered ELLIE and whose daughter was ELLIE's first trainer when she was in the service dog class at WVU. We hope to meet them in the future.

Anyway, we are so excited for Grace and COLT! You can see the pure joy on Grace's face in all the graduation pictures. Way to go Grace!

We are also eagerly looking forward to the day when ELLIE will come to live with us and be Amanda's best friend and helper. We are so grateful to the paws4people organization for all of their love, support, kindness, and friendship. Everyone from paws4people is totally amazing! They really have become like family and the gift they are giving Amanda will make such a tremendous difference in her life.

Tomorrow, we have the pre-op appointment at Johns Hopkins. At this appointment, we will get to talk with the anethesiology department and do any other testing needed prior to Amanda's Wednesday procedure. That appointment is at 12:15 and should last a couple of hours. Then on Tuesday, we meet with the pediatric vascular neurologist. I will post again after each of the appointments with an update.

Thanks for all the prayers and well wishes. We know Amanda is in good hands hear and we are optimistic that we will continue to get good news. Have a great day! God Bless!

Susan

Meeting with Dr Gailloud

We met with Dr Gailloud yesterday afternoon. He is the doctor who will perform the angiogram on Amanda on Wednesday. Has performs this procedure 5 times per day, 1000 times per year, and has performed it on 350 children, including a 1 week old child yesterday. I think we are in good hands.

He told us that the aneurysm is present on her MRI scans all the way back to 2006, so it appears to be stable. We only found out about it in her latest MRI (2 weeks ago) but upon closer evaluation, it is present much earlier. He had several of his Hopkins colleagues look at all the MRIs as well and they could all see it in all the scans and felt it had not changed significantly from 2006. Their best theory is that it probably occurred in conjunction with her surgery in 2005.

She needs the angiogram so that they can see the shape and characteristics of the aneurysm in more detail. They will do a 3 dimensional CT combined with the angiogram so that they can understand exactly what it looks like and assess what needs to be done. He indicated that there was a decent chance that they will choose just to follow it closely every 6 months if it appears as stable from the inside as it does from the outside. The alternative is surgery but the risks of surgery may be higher than the risks of watching it, especially if it is stable and shaped in a way that corresponds to lower risks of rupture. It is nice to finally be getting some good news again. We meet with more doctors early next week, so we will keep you posted.

Today was graduation at the prison for the dogs COLT, ELLIE, and NIKKI. We were sad not to be able to attend but we are glad we are getting Amanda the care she needs. My aunt and uncle attended, as did our good friend Carol Sullivan. We are so happy that Grace and COLT are finally together and we are excited that Amanda and ELLIE will soon be together. Have a blessed day and thanks for the love, support and prayers.

Susan

July 24 Update

We decided to have the aneurysm evaluated at Johns Hopkins since we were only 3 hours away in WV and everyone was getting pretty tense about being up there with Amanda. We had consulted their neurosurgery dept about the risks of waiting for evaluation, flying, etc and they took a real interest in her case. So we headed to Baltimore on Tuesday after numerous discussions with their doctor who specializes in this sort of thing. He has evaluated her records and gave us some good news in that it appears the aneurysm is fairly stable (i.e. not growing fast). He also helped to walk us through the events of last night when Amanda had another seizure. We spent 6 hours in the ER but Amanda is doing much better today. She is a little mellow but is otherwise acting ok.

In terms of where we head from here, the next step is a pre-op appointment on Monday the 28th and a procedure on Wednesday that will allow them to get a better view of the aneurysm. Of course, we are praying that it will either not really be an aneurysm or that it will be a minimally risky one that is easily addressed. Once they know what it looks like and what the shape is, they will know better what we are dealing with, what the risk of rupture is, and what the best course of action is. We will keep you all posted as things progress.

Unfortunately, we will be missing ELLIE's graduation this weekend, but we need to stay close to Johns Hopkins for Amanda's benefit. The paws4people organization has been wonderful to us. We had a great time with them last week and they have been tremendously supportive. One of the really neat things we learned during our trip to the prison last week is that the inmates have been praying hard for Amanda every day. There are some really special people in that group of inmates -- so caring and thoughtful! The other good news is that Amanda's current issues don't change anything with respect to ELLIE. The paws4people group told us we could get ELLIE once things calm down for us and we return to Wilmington. That definitely gives Amanda and the whole family something fun to look forward to.

We will continue to post frequently as we head through the next couple of weeks. We know God is in control of Amanda's situation and that he has a perfect plan for her life. We believe she will come through this even better and stronger than she started.

God Bless and thanks for the love and support!

Susan

Summer Update

June was a wonderful month. We drove to Texas to visit Dan's family and had a wonderful time! We got to see a lot of relatives that we haven't seen in a while and had a fun time with all.

July brings wonderful news and disappointing news. The wonderful news is that we are in West Virgina working with Amanda's future service dog ELLIE. Graduation will be July 27 and then ELLIE comes to live with us. The disappointing news is that on Wednesday of this week, Amanda was diagnosed with an aneurysm. The aneurysm was found during a routine MRI for her annual UCLA appointment and confirmed with an MRA. Evidently, the aneurysm was there in last year's MRI as well but no one picked up on it. It has grown slightly in one year. Anyway, we are holding tight talking with neurosurgery trying to schedule additional tests. It sounds like we may be headed toward another surgery to correct the problem. We are faithful that this is just another bump in the road and that Amanda will come through it just fine. All the doctors told us to go ahead with the WV trip while we awaited scheduling and it has been a good decision. Working with ELLIE and our friends at paws4people foundation have been therapeutic for all of us. As always, we thank you all for your love, friendship, support, and PRAYERS! Thanks so much for all you do! We will keep you posted as we get more information on the events ahead. God Bless!

Susan