Monday, January 25, 2010

A week without any scheduled doctor appts

It is great to start the week without having any doctor visits on the books. We only have vision therapy, physical therapy and OT scheduled for this week, along with a weight check and a visit for the developmental specialist with early childhood intervention. This is a slow week for us, hopefully it will stay this way! I even cancelled one of our appts with the eye doctor next week (I decided that he doesn't do anything that helps her, he just makes her cry and says to come back in a few months). My goal is to make sure that she gets great care, but that we weed out the things that just waste of our time or will make no difference in the long term. Another example of this is some of these doctors suggesting that we do a big run down blood work to try and discover what type of infection caused all this. This would be wonderful if we could time travel and treat it, but that is not an option. When I ask if it will change anything (treatment plan wise) if we knew, the answer is always no. So no sticks for the sweet baby! Life is too short for the things we don't need.
We hope to have a great week and just enjoy some great Texas weather.

Sunday, January 24, 2010

God provides the people you need

One of my regular prayers is to provide the people that I need, when I need them. So far, God has been wonderful about doing this in my life. I have some of the most amazing friends and have met some of the most incredible mothers. The mothers that I have met have been so great at directing me to the resources that I need and preparing me for the things that the doctors have told me. I know that it is God that has put these people in my life and that he will continue to provide in many ways.
These past several months have been so hard and I know that many times people do not know what to say to make it better, but by them just leting me know that they are on the journey with me. By just sending me a note or a call saying that they have been thinking about us, it keeps me going. Kind words, saying I love you, I am praying for you, I am thinking about you mean so much. I am still so perplexed by the journey that we are on, but I am sure that there is a reason and that God will give us all that we need. I know that I will also continue to meet amazing mothers on this journey and that I cannot imagine how we will be changed.

Friday, January 22, 2010

Little boys are the best

I am so lucky to live in an area that has a number of other great christian families.
Brighton and I have started reading the 90 day Bible and about a week into the adventure, I decided that it would be great to have some of Brighton's other friends to join in on the challenge. I have 3 other little boys that are now committed to read the entire bible in 3 months. We are meeting once a week at my house and discussing each weeks readings. It is so great to see these 10 year olds doing what many adults will not even try. I can hardly wait to hear what they will say each week!
Brighton read over half of the Bible last year, and I love some of the questions that he asked. I know that even if the boys do not understand everything they read, they will be impacted for the rest of their lives!

Wednesday, January 20, 2010

Sorry for the delay in updates - saw neuro on Friday

Good Morning,

Well we saw the neuro on Friday and it was a fair visit. He believes that she is having focal seizures and will continue to have more and ever changing seizures. He is not a big optimist, but hopes that meds will help. We started her on a low dose of Keppra over the weekend and will taper it up over the next few weeks and see him again in a month. We are to continue to wathc her closely to see if we see any seizure activity, espically if it is clustered together. If so, back to the hospital. This little girl sure knows how to command attention! I thought we were already watching her closely, but I guess she would like a bit more looking after. What a little pill she is and we love her for that!

Thursday, January 14, 2010

Another day, another doctor visit

The daily update-
Today we had our regular visit with our developmental doctor. This is always a hard visit, but I have to say that she is wonderful at putting the whole picture together and she really cares about Molly. These visits always last about two hour and are very detail oriented. What we know is that Molly seems to be stuck at the developmental level of a 6 wk old. She has now officially diagnosed her as having CP and many of the issues that go with that. Molly is very high tone and we are hoping that they will do botox on hips to help those muscles relax. They are very concerned that her hips are not developing as they should and if we don’t address that soon, she will have to have surgery. The next issue that they are concerned about is her growth. She has now dropped off the growth chart for her weight and almost for her height. There are two things that are going on with her growth – one is that she may not be making growth hormone and two is that she is just burning so many calories (due to the high tone) that she can’t gain. We will now go for a feeding evaluation and swallow study. We have to make sure that she is swallowing liquids well enough to supplement her with a high calorie formula (she is currently a breast baby and really does not like the bottle). We are going to wait one more month before going for an endocrine evaluation. Her head is also no growing, which may mean her brain is not growing – we have an MRI in February to look at this. Our last major concern is related to Molly having seizures. We will see the neurologist in the morning. We will have more answers then.
These past few months have been the hardest of our lives, but it has taught me I can handle anything with God’s help. It has also taught me that there is still so much to be thankful for. I love my family so much and I am glad for each day with them. I am also so thankful for all of our wonderful friends and the support they give us.

Wednesday, January 13, 2010

A bright new day

It is amazing what a bit of sleep, time on the treadmill and a bit of time in the garden can do! It is a beautiful day in Dallas and Molly has been so happy. I just love it when she smiles! She almost laughed today when we were tickling her. It is these moments that are so special.

Tuesday, January 12, 2010

Good news and bad news

Well, we spent a long night at Medical City Dallas on the Epilepsy floor with Molly hooked up to an EEG and being recorded. We had to stay in a small area with her always facing the camera. She did great, but really hated having the leads glued to her head for the test (check out Kelly's facebook to see the pics).
The good news is that she did not have any of the speicific seizures that we were worried about. The bad news is that she did have some seizure activity, but it is much more easily treated than infantile spasms. We will discuss a treatment plan on Friady morning after the doctor has had more time to look over the entire EEG.
We will go to see the developmental doctor on Thursday and will discuss her growth again along with some cardiac concerns. We have decided that we just need to get all the test done and out of the way. It seems that every couple of weeks there is a new problem and both Kelly and I are so tired. I think we have both hit bottom and are just ready for the Lord to pick us up. I know that there is a plan and he has a wonderful plan, but sometimes it is a hard road getting there.
I want to thank you all for the prayers and warm wishes. It is our friends and family that have got us this far and that will continue to help us along.
Brighton is doing the best of us all. He is becoming such a responsible helper and is such a joy! He is reading the 90 day bible along with me. It is wonderful to see him grow into such a great person (even though I know that the teenage years will derail some of the sweet factor). I know that he will have a great base for his entire life because of the trials of this past year.
We love you all

Thursday, January 7, 2010

More pics from Thanksgiving

Family Pictures from Thanksgiving

I have got to stop seeing doctors!

I have said this before, and I will say it again - I hate going to the doctor.

Today we saw the pediatric neurologist. All the neuro guys are weird to start with and that is still true. He is very nice, but different. We reviewed the EEG results from Tuesday and it was another heartbreaking visit. We were sent to the neuro man due to repeat startling that just seems to be getting worse. Her EEG shows slow activity (consistent with a major brain injury) and very chaotic, high-voltage pattern when she is sleeping. We have to go back on Monday for another longer study just to confirm, but he is 99% sure that she has a disorder called Infintile spasms. The outlook is of course bad - as with everything, and the treatment options are few. There are only two drugs that are effective and one has a 40% chance of causing blindness - which the doctor was quick to point out would not be an issue since she is already blind. I could have come across the room and kicked him for that comment, but I also understand that he does not have the same hope that we do. The hope that she will regain some of her vision.

We continue to hope for the best and pray for that miracle. Molly is still the most beautiful baby around and our job is to make sure that she gets all the love and care that we can give.

Saturday, January 2, 2010

Our Christmas Letter

“For I know the plans I have for you,” declares the Lord, ‘plans to prosper you and not to harm you, plans to give you hope and a future.’ - Jeremiah 29:11

Dear Friends and Family,

We hope that each of you have had a wonderful 2009. It is hard to believe that we are at the end of another year and to look back and see how much has changed. For us, the past few months have been some of the hardest, but we are confident that God has a great plan for us and everything will work together for his glory.

Both Kelly and I are healthy and doing pretty well. Kelly has just recovered from sinus surgery and is glad to breathe well again. I was laid off the first week in December. I now feel that it is a blessing. I had been working as a medical liaison and I am looking forward to going back to the clinic and utilizing my nurse practitioner credentials. Brighton is ten and doing wonderful! He is making straight A’s and is now a red belt in Karate. Molly is the newest member of our family. She arrived on June 9th and has been beating the odds since then. We found out a few weeks before she arrived that she had severe hydrocephalus and did not know if she would survive to be delivered. She made it here in much better shape than the doctors expected and was taken to Children’s hospital to have neurosurgery. We are now waiting for that brain to repair itself and grow. We are also hoping that with time, her vision will improve and she will be able to see. Although each day has a number of challenges, she is beautiful and a gift.

This year has also brought challenges for both of our parents. My mother was diagnosed with a leiomyosarcoma in her leg the same week that we found out about Molly’s complications. She has had surgery, is undergoing chemotherapy and then will start radiation therapy. The good news is that her cancer has not spread, and that my parents have been in the DFW area while undergoing treatment. Kelly’s mother was also diagnosed with cancer several weeks after my mother, early stage breast. She is also getting the oncology special with, surgery, chemo and radiation therapy.

My brother and his family are all well and we are pleased to say much closer to us now. They moved to Wichita Falls this year and we know see them all more often!

God has truly been testing us this year and we ask that you keep us on your prayer list. Please pray for our renewal and strength, Brighton’s well-being, Molly’s growth and healing (we want the full miracle special), and our parent’s health and I guess I need to add the perfect job for me in 2010.

We have been so blessed with wonderful friends and a supportive family, along with our faith. It is all these that have helped us through these past few months. Thank you all and we love you.

Merry Christmas and hope to hear from you soon!

Kelly, Teresa, Brighton & Molly