Kali Elizabeth Mae Holderfield

not what we expected..

1st.. I am amazed at my Kali Mae. She is beautiful inside and out. She makes US so proud!! We love everyone so much for all the love and support that we have been shown thru the days and months and years..
With this being said.. we received news today that Kali has tested positive for the mutated Scn1A gene. This means Kali has severe Myoclonic epilepsy of infancy AKA: Dravet syndrome. Needless to say this news was unexpected and we are still gathering our thoughts and feelings about this. This does not change the treatment plan as of right now. This does not change the medicine that we are currently using.We have an appt with Dr.P October 29th so we will be writing ALL our questions down and presenting them to Dr.P at this time.I have also been in contact with Dr.Jewett at Wake Forest (the genetic DR) to ask her opinion about this. I will be doing some more research on my own (Like I usually do) if you know of any info please let me know. We would appreciate prayers for Kali and this new diagnosis. It is so scary to not know what this means for her or her future.

much love..

Check this out!!

some recent pics for your viewing pleasure..

 

I am also adding more pics under the links

 

busy weekend!

this past weekend was sooooooooo busy. Or at least for us! Friday night was my friends bachelorette party, so I went to dinner with the girls and enjoyed the night out! Saturday was Devens soccer game & last minute we decided to head down to SC to the outlet mall in Gaffney, Sc. It was fun! We invited mimi & papa John which was great. Except when Emma Claire screamed ALL THE WAY home! Sunday we went to the Obama rally at Asheville high school! I tell ya what, he can sure make you feel good about this election! He was inspiring!

The girls in there OBAMA shirts that my mom sent them (Love you mamaw!!)

so enough about us and lets talk about Kali.. We will increase the med up this Friday to 0.5 and lower the Depakote dose to 1 time daily. She has not sat up anymore, but that is OK. She will do things in her own time in her own way We will be patient. other then that, she has been good. Sleeping thru the night (ssshhh) and only having minor spazz moments during the day. She loves music. Loves to be outside!

Emma is doing good. She is eating some foods here and there. Not really doing it on any kind of schedule. We have actually been feeding Kali also. She LOVES banana’s! they both do!

I am still waiting for the Dravet test to come back.. any day now.

Miracle!!

things are rough around here..

Kali oh Kali… she screamed last night from about 5:30 pm until around 11:00pm. I am not sure what provoked this onset of screams but it was enough to about make your head spin..literally. We tried everything to calm her down with no success. In the middle of the scrams I was trying to get books bags ready for school and Emma down to sleep and dinner mess cleaned up. I so wish we had a maid sometimes. haha.

I also found out that the insurance company may not pay for the adaptive stroller. I am thinking of fund raising ideas to help with this expense. If you have any ideas please let me know! Kali NEEDS this stroller. It has got to the point, where her stroller she has now is not safe for Kali and does nothing for her neck control… I am waiting to hear from Accucare but we still could get together a fund raiser!

I have tried some veggies with Emma Claire. So far she LOVES squash and sweet potatoes. I have made some home made avocado’s. She did not like this to much.

I have some pics for you to enjoy.. I want to tell everyone who has made comments below that I LOVE YOU! We have made it thru this with the love and support from all our friends and family -near & far! xoxoxo

ok.. now some pics! I am adding some others under the pic sections!

 

our friends..

On Friday (after Kali’s therapy) I went to check out the Family support network center at the Children’s center at Mission hospital. I have heard wonderful things they do for families, but I was also curious how we could go about helping other families in need for support. I was surprised to learn they needed more volunteers and they asked if I would be interested in talking to other parents and maybe even meeting some of them there and be there shoulder to cry on. I immediately said YES! I would be honored to do this for other families in honor of Kali! I gave them all my information and they told me about the meeting that takes place every 3rd Monday of the month. It is from 5:30-8:00 pm with sitters/dinner provided! Whoo Hoo date night! They start the fall session in October, so we will be starting new with everyone else!

So…anyways. I provided Kali’s website address for parents to come to and read the experiences we have had with medicines and therapies. I asked the families on the IS board for there kids website address and I have had an over whelming response .. so please check out these kids sites (to the left under IS friends). Read what these kids & families go through every day of there precious lives. Read what these parents do every day to care for these kids. These kids become literally the center of your universe and I hold every single parent in the highest regard. I am amazed at there strength and courage to wake up every single day and do it all over again. I am in complete amazement that these parents will and have sacrificed everything for this little child who they love so much. Each of our lives have been changed forever. We are so fortunate to have these children in our lives .. Just when I think “we cant do this anymore” Kali will smile and that is her way to say “mom & dad- I love you. Please be patient with me”  When kali was born, was the sweetest day. She is such a blessing to our lives.

These children may never speak. may never walk or sit. We will be there voice and legs. We will be sure they know how much there loved. We will describe in great detail what the rainbow looks like. We will have them feel sand on there toes at the beach or snow on there fingertips. We will love them unconditionaly as they will love us.

to all the parents who have a special needs child…. your my hero. bless you and your family and most of all  God bless your child.

 

on to the medicine.. We started Kali on Felbatol on Saturday. We will be doing a very slow increase. Every 2 weeks we will have to have her blood checked (CBC & liver panel) she is at high risk for bone marrow suppression and liver failure. Please pray that kali will be healthy during this 6 month initiation phase. Today she had a so-so day. I will keep you updated!

New plan??

Yesterday, Kali did not have a good day. She woke up at 4:00am and was awake until 10:00 pm. She was on active hyper speed. She could not settle down, stop moving, stop twitching or jerking. We finally called Dr.P about 9:00 pm and he said to go ahead and give her the nightly medicine and see if it slowed her down. If not then we were to administer the Diastat, So after about an hour of the meds she did slow down. She also spiked another temp.. he said this could be common in seizure kids, having trouble regulating there temps.

He has now suggested we try Felbatol on Kali. It is the medicine I referenced earlier in the year. It is very dangerous. 1 in every 2000 kids will develop aplastic anemia and liver failure. She will have to have blood draws every 2 weeks to check for this. AT this point, this is one of the meds we have NOT tried. Kali has been on over 16 meds and nothing has worked. We will have to wean her from the Depakote. I am waiting to hear from Dr.P what exactly he wants to do.. Hopefully this medicine will be successful for Kali. I will let you know what Dr.P suggest when he calls back..

Been a while?!?

Im sorry for the slack of updates. bad bad Lisa.

Today we had the genetic appt in Statesville for Kali. We had the hardest time finding gas this morning (from hurrican Ike) that we were about 10 minutes late to the appt. We met the DR. and she is honestly the most sweetest Dr I have ever met. She went over in GREAT detail everything she was doing and wanted to do for Kali. She said that she is going to check with Wake Forest and see how much DNA they have on file, we may be able to use this blood for future test she is wanting to run. She is checking with UNC and there genetic team to see what was done there. She wants to run a test called the P-10(??) and possibly another version of the Retts test.

She does think that Kali has a mutated gene. It probably happened during the dividing of cells process, when she was being developed in my uterus. The gene will mutate and not develop properly. She said we may never know the specific cause, but they will continue looking as long as there are “signs” that Kali shows us.

We started Kali on a new medicine called Neurontin. It is to supposedly help with sleep issues. so far it has nto helped with nothing! We are holding out hope though!

Emma Claire is doing good. She is a little cutie pie. She is learning new things every day.  She LOVES to watch her big sister Kali!

Jordan & Deven are doing good. They are adjusting to there new baby sister at there dad’s house! There dad and step-mom had baby Kyndall last week. There surrounded by girls!

another wild ride..

Kali and her issues with NOT sleeping has made mama and daddy quite anxious. We are just out of ideas at this point. How do people function on such little sleep for days and months and years? She will go thru a good pattern of maybe sleeping 6hrs straight for 1-2 days then 2 weeks of basically no sleeping. On top of this, Emma is waking up every 4hrs or so to nurse. I feel so bad for Calvin having to work, but if I were to get up with kali & nurse Emma I would be up 24/7. I know this can be normal for neuro kids, but there has to be something that can help us out!

Deven won his soccer game Saturday! He does such a good job!! I need to take some pics and post them soon.
Jordan got his mid term report and he is making all A’s and 1 B so far! Yay for Jordan! Emma is doing good. She is such a happy baby!

Other then kali and her NON sleeping, she seems to be alright.

Here are a few pics I snapped of the girls.. *There are also new pics under kali & Emma*