All About Dad

1. What is something dad always says to you? Be good

2. What makes dad happy? Seeing us

3. What makes dad sad? Not seeing us

4. How does your dad make you laugh? Playing with us and telling jokes

5. What was your dad like as a child? happy

6. How old is your dad? 31

7. How tall is your dad? TALL...Really tall

8. What is his favorite thing to do? Cuddle

9. What does your dad do when you're not around? works 

10. If your dad becomes famous, what will it be for? because he wants more money 

11. What is your dad really good at? cooking

12. What is your dad not very good at? I don't know

13. What does your dad do for a job?  EMS 

14.What is your dad's favorite food? sandwiches- he always takes them to work

15.What makes you proud of your dad? being happy

16. If your dad were a character, who would he be? Marshmallow from Frozen 

17. What do you and your dad do together? Go on a daddy/daughter date

18. How are you and your dad the same? We both love our mommy

19. How are you and your dad different? We are not as tall as each other

20. How do you know your dad loves you? because he plays with us

21. What does your dad like most about your mom? she's sweet

22. Where is your dad's favorite place to go? to the movies

23. How old was your dad when you were born? 29

And the results are in...

Remember back in November when LittleK was inpatient at Children's Medical?

Remember back in January when we drove 2 hours to go to the ER to see a neurologist because LittleK was turning blue?

Since then, we have made multiple phone calls and a few more trips to Dallas for doctor's appointments with different specialists. 

The last time that C and LittleK went to Dallas, they saw Dr. O. They got the results back from her genetic testing they had run back in November. What made my the most upset was that they had gotten the results from all of the testing done back in December, but we didn't get the results back until early April. From other doctor.

The verdict: a rare chromosomal mutation known as 

3p Deletion Syndrome. 

The above link is probably the best one we've found. There are few others out there, but this one breaks it down the most. There really isn't a lot out there on this. We don't know what the future holds. All we know is that we will continue to love on LittleK and keep going with therapies. We can't change her genetics. We can't change her chromosomes. All we can do is learn as much as we can about this and advocate for her and get her the best help we can. 

C and LittleK will be traveling this week to see a geneticist. We don't know how much more info we will get this week, but at least we are getting answers, which is better than nothing!

Like I said, as for now, we are continuing with her therapies and seizure medication. She is going twice a week for occupational and speech therapy. We hope to be adding physical back soon. 

Please continue to pray for progress, safety for travels to and from doctor's appointments, peace for me as I'm not going to these appointments because of my work schedule, and for understanding for BigK as we are having to give her little sister more attention at times.

Also, if you can, please consider donating to our GoFundMe account to help with medical and travel bills. C and I are trying our best and cutting out as much extra as we can, but when we have to travel at minimum 2 hours one direction for doctor's appointments, it can get expensive quickly when we have other day to day bills to keep up with as well. Thank you!

Palm Sunday and Easter

Palm Sunday and Easter are 2 of my favorite days of the year. Between the Triumphal Entry and Resurrection, it's amazing to think that the LORD was humble enough to ride in on a donkey, but also mighty enough to DIE for us.

Another, maybe a little more selfish reason, why I like those days are because we can start wearing spring clothes. Yes, I'm still traditional on the whole white shoes after Easter and they get put up at Labor Day...Yes, I know, not many people follow that anymore, but it was instilled in me at a pretty young age...Thanks Mom!

So here are BigK and LittleK busting out the spring colors!

C was off this year for Easter so we were able to get a family picture this year on Easter. Also, I have to get pictorial proof that C actually agreed to wear purple!

The Easter Bunny came. However, we defiantly remind the girls of the real reason for Easter. It's not about eggs or candy or some character, but about the LORD dying on the cross and raising again to save us from our sins. 

However, we still do some of the fun traditions like a picture with the bunny. LittleK wasn't such a big fan this year, but we figured she wouldn't be. It did go better than we expected though, and a lot better than Santa...

HE IS RISEN!

Adventure's of LittleK

Wow! The last month and a half has been crazy! Sorry for the lack of updates...

Back in the last update, I mentioned that we were worried about LittleK turning blue at times. Well, between the blue spells, she also would have times where she would become "zombie" like and would walk into walls/tables/other objects and fall straight backwards and hit her head. We were in contact with her pedi here at home and the neuro team at Children's. Her pedi here said that the next time it happened to take her straight to Childrens. 

Back on January 22, she had an off day at Mother's Day Out. We loaded up the truck and headed 2 hours away to get to Childrens. We didn't get past the ER. The neuro on-call, who didn't even come down to see us, said she was fine and wasn't going to change anything until our appointment in late March so they discharged us. [Let's just say we were less than pleased!] On the way home, we were in an accident which resulted in 4 ambulance rides and 4 additional ER visits just hours after our adventure started. 

We have since been in contact with our pedi at home, and he was able to get us in with a new neuro (Dr. O) in just a weeks time. Dr. O changed her medication on February 3. While the new medication is helping with her social skills, it is causing her gross motor skills to regress.

She is back in therapy twice a week, however, right now, we are without physical therapy as our therapy center is between physical therapists. Her social skills have blossomed and her speech is exploding! She was making progress with the gross motor skills as well, but with this new medication that has stopped. We have adjusted the medication and in touch with the new doctor. We do have another medication to try if we can't get this all figured out. She goes back to Dr. O in April. 

**GoFundMe**

Update on LittleK

I've had several people ask me about what's going on with LittleK since our adventure back in November with her inpatient stay at Children's in Dallas due to neuro issues. I figured that I would update...That and I need to do a 2 year old update.

That's right, LittleK is 2! She is 20lbs6oz and 31.5in.

While we do not have anymore answers and do not know much more than we did when she was discharged, we keep moving forward. We are in constant contact with the doctors- her pedi psych, her pedi nuero, and her local pedi. We go back to the nuero in Dallas in late March. Hopefully we will get some more answers and possibly a diagnosis then.

We have transitioned out of Early Childhood Intervention into private therapy at a local therapy center. We are continuing speech and occupational, and we have recently picked up physical. We are going once a week for the month of January until her deductible is met. Once that is met, we will transition back to twice a week.

LittleK still has a long ways to go, but has come so far. While her vocabulary has not increased, her "talking" has. She is figuring out ways to communicate with us. It is a learning process still for her and us. There are still days where we all end up in tears due to frustration because she can't tell us what she wants/needs, and C and I can't figure it out. C built her a spinning board so we can do spinning therapy at home, which her OT suggested we do. Some days she likes it, others not so much.

Our newest concern is that at times, her hands/feet/lips get really cold and turn blue. Her pedi did lab work to check her levels since being on the Topamax for her seizures. Those came back normal so they have called the nuero in Dallas to see what our next step is. We are wanting to see if it is seizure related or medication related. We are not sure at this time if any further testing is needed or when/where that will be done if needed.

*If you can, check out the GoFund Me link on the right and help us out*

BigK the 6 year old

BigK is 6! How did that happen? My first born now has to use both hands to show her age.

Poor girl had the flu on her birthday!

She is 40lbs6oz and 44.5 in. Growing, but still tiny. But healthy. Doctor didn't say anything. Guess when you start out at less than 5lbs, you start behind the curve.

She is half way through kindergarten and seems to be enjoying it. The school does want to do a speech evaluation on her, which doesn't surprise us, and we know what to expect since LittleK has been in speech for over a year now. She's doing well in school. Her reading could improve, but it's a learning process!

She is an amazing big sister, and is trying her hardest to understand why we have to give LittleK so much more attention sometimes. We do try our hardest to spend time with just her to help her remember that while she doesn't get 100% of our attention anymore, she's still special to us. 

Of course, being 6, there is a new attitude that we have to handle. I think we are the same person, which of course we either get a long really well or not at all. I pray however that as she grows, we grow closer together and have a relationship like no other.