WHY??

I'm sitting here tonight looking over some of my video from Twink's Metcha Day in China. I was dumbfounded by something I had never noticed before but KNEW while I was there. I remember telling EVERYONE in that room and asking a question that was answered with a no! In my video I saw a man fixing Twink's hair to make her look beautiful for us. I thought in the video it was one of the directors but it was not! It was her FOSTER DAD! I am heart broken that our guide did not tell us who he was. I asked him if that's who was over there and I was told no. I had this gut feeling the way he was hovering over her, you could just tell. To have had a picture of all of us together would have been priceless. To communicated a few words would have been priceless! I can not describe my feelings. I am just so saddened. I wonder what he thought when we didn't speak to him! :(

Sweet Innocence

Today, one of my sweet baby girls (I have three your know) Spitfire went in for her pre-K physical. Not to mention her 4 year check up. :( She did great! Went through all the motions with flying colors. Couldn't figure out why she had to pee in a cup and hopefully she doesn't try this at home but she did it.

This is where the title comes into play. She had to have an eye exam done. The nurse pulled out the fancy card board with all the shapes and symbols on it and sits next to Spitfire and asks her what each one was. She was looking to see what her response was so when they did the actually test she would know if she knew the shapes or not. She was doing great. The lady pointed to some thing and asks Spitfire what it was and I hear Spitfire say "Jesus"! The nurse got a huge smile on her face and told her she was right. I had to stop and think for a minute. What would be on that board that she would call Jesus. It was a + sign. Spitfire is always making crosses which she calls Jesus. To my husband and I as a parent who are trying to bring our children up knowing the Lord it shows us that we are making a difference. Our soon to be 4yr old made a woman think about Jesus today! Who knows if she thinks about him ever! TODAY she thought about him and hopefully when she goes home she will think about our daughters comment. It warms my heart when you see or hear things come out of a childs mouth that are unprompted.

Oh and by the way she needs to go see the eye doctor! LOL She will be excited if the eye doctor tells her she needs glasses. As daddy was ordering his new pair she found a pair she like. Hannah Montana! She cried when we didn't buy them for her. I tried to tell her that she didn't need them yet and we needed to see an eye doctor first. She didn't want to hear it. Maybe I should get her hearing checked! ;) LOL

Pictures!

This picture was taken the night we returned home from the ER after Twink's seizure. As you can see she is pretty sleepy from all the meds and from the seizure itself. She had matching boo boos on both arms.
Here is a picture from yesterday of the two girls down at our church camp. Twink was not happy if we put her down at all. She wanted us to carry her. Dash is down at camp for the week and was not too sure he wanted to stay after he realized he did not know anyone there this year. After a lovely lady took him under her wing and a phone call home last night he is now doing much better.
This is Spitfire in front of the cabin we stayed at last year. I have a picture of her from last year but for some reason I can't get it to post. I'll try again later.

Rescheduled!

Twink's surgery has been rescheduled! It will take place on August 19th as long as she gets medically released from her Family Doctor and her Neurologist. Oh please pray that this happens and all goes well. I'm not worried about the tubes although getting that fluid off her ears will help a great deal with her hearing. I am more interested in the sedated hearing test. We know she hears but we are not sure about the quality.

So who wants to see pictures of Twink? Sorry I'm slacking, I don't have any recent one. I'll try to get some up soon. Sorry for teasing!

Check It Out!

Thanks to Carla I have a wonderful new look for my dress site! What do you think? If you need a blog design she does an amazing job! I have to add a few things but I will have it up and running in no time!

Twink is doing some exciting things. We have been doing some sign language with her for some time now. Well she is actually starting to use it!!! Last night she signed play after I signed it. She can't actually make the Y formation but she shook her little fist in the right direction and I KNEW what she was doing. Right after that she signed EAT! First time she has done that by herself. I could hardly contain my excitement. I was jumping up and down and "Yeah Twink" when I realized what she was doing. Can you imagine me running around my kitchen trying to find her some thing to eat? LOL Last week she signed please on command. She only does these signs when SHE is in the mood. So it really varies. Everything she signs is one handed but that is OK right now, I'm excited to know what she is thinking. She is starting to really try and repeat words. Many times she does so with out opening her mouth but today she floored the ST and I and repeat GOAT! We couldn't believe our ears! It was clear as day. WoooHooo Twink!

Since the seizure Twink has started to cry when we go to put her down for a nap or at bedtime. I'm not really sure of the reason and it does not last long but she really tries to cling to my neck. I've tried to rock with her but eventually I have to put her to bed and it starts all over. It makes me sad that she is that upset about something.

I've also decided to start a binder to keep track of all of her medical records. I've received her MRI, MRA, EKG, Echo, Dr reports, IE and plan on keeping them to reference to if needed. Hopefully I'll have a report of her hearing tests sometime next month. Still trying to reschedule the surgery. I figure with all that is going on with her it would be best to keep everything in one place and I can take it from doctor to doctor.

Looking forward to a relaxing weekend! Hope you all have a great one. We have planned a weekend getaway with our kids next month and we are looking forward to it very much! Oh I can't wait to relax!

On Hold Indefinitely

Twink's surgery is on hold indefinitely at this time! UGH!!! I know it is for the best but it really is frustrating. I talk to the neurologist this morning because I forgot to ask yesterday if she could have the surgery before the EEG. The answer is NO. She must wait until after the EEG which is August 9th, yes a Saturday. If it looks like she needs medication she'll have to be on that for at least 4-6 weeks for it to fully kick into her system. So it looks like we are looking at the middle of September! I just can't believe we have to wait that long. This test was suppose to be done back in FEBRUARY! I know the Lord knows best and I am trying to see the positives in this. Some times it is just SOOO hard. I'll keep you all posted.

On Going Tests!

Twink went to the neurologist late in the day yesterday. He told me he was surprised to see us so soon. We saw him less than a month ago. I was told by our family practice doctor that the neuro doctor was expecting her to have more seizures but did not know when.

The plan is to do another EEG and see what the out come of that is. He would then start her on a medication called Keppra. The doctor said there is little side effects, no blood draws and if it is the seizures he thinks she is having she'll have to be on the medication for quite some time. He said he does not believe they are febrile (just like every other doctor who cares for Twink) because with febrile one side of the body is not usually affected, it's usually both. With Twink's, hers start out as one sided. Also a 102.5 F is not considered a high enough fever to throw her body into a febrile seizure. Usually they are much higher.

So as you can see, her surgery was canceled! I have no idea when they will reschedule! I don't know the reason they canceled because I have not talked to anyone at the office. I sure hope to hear some thing today. I pray that it does not take another 6 wks to get it scheduled. I am frustrated!

Calgone Take Me Away!!!

Lia has not had any more fevers but is extremely cranky. She is super clingy and drooling much more than usual. The constant crying makes me cranky. Actually it makes me kind of crazy. The Count says she was like this after her last seizure but I can't remember. I'm sure she is still super tired and just not feeling herself. We will see the neurologist on Monday. So far I have not heard anything as to her surgery getting canceled but we will see come Monday. I'll keep you posted. Thanks for the prayers they have been needed.

Tonic-clonic seizure!!

That is what Twink had tonight. Of course she had a 102*5 temp but they (the docs) don't believe it is febrile. I knew some thing was not right with her and she started with the seizure soon after I noticed. I called 911 and the ambulance took both of us to the hospital. This seizure lasted longer than the last one. I think it was close to 2 hours. We are home and very tired. She has two appointments tomorrow, one with her ped. and the other with the neurologist. More than likely they will start her on medication. Please keep us in your prayers.

Can I Scream?!?!

Oh, please pray that Twink will be able to have her surgery next week! As you may have read, Spitfire had the hand, foot, mouth virus. Well guess who started with a fever today? Twink!! From what I've read it is the first symptom of the virus. I feel like I can't catch a break. I really want this surgery done and the hearing tests out of the way so we know what we are dealing with. She goes to the doctor for clearance tomorrow and I'm afraid that he'll say no way. Please pray that this is not the case. I promise to be better about updating when I hear some thing.

Wordless Wednesday

Still Here

First let me say Twink is doing great. She is fever free. Spitfire does have hand, foot mouth as of last Saturday. I'm praying Twink does not get it because she has her ears done next week. Not sure if they'd put her under if she had that virus.

Last week was extremely busy. We have been preparing our church for a potential pastor. All week I (and others) worked on the landscaping in front and near our main doors. It looks wonderful, if I do say so. While I was working in the front of the church on Tuesday, some teens broke into the church and did graffiti on our adult Sunday School room walls. At the time I was the only one there. The police think I may have scared them off. I'm must say I was a bit startled when we returned to the church later that evening for our board meeting and everyone started questioning if I had seen anything. So on top of doing the landscaping we had to scrape creamer off the tables and soak the rugs in order to breakdown the non-dairy creamer that they spread all around the room. They were super nice to moisten it so it was like dried on glue! We ended up painting the entire room and steam cleaning the carpets. I must say I was pretty sore from all the work we did.

I'd like to ask if everyone if they would pray that God's will be done and that this gentleman we interviewed will be our new pastor. His family is wonderful and I love his wife. They have three bio boys and adopted a little girl from the foster care system. Now comes the shocking part! I shared with the wife that Twink had an in utero stroke and she told me that her daughter had the same thing! I think my eyes teared up because I couldn't believe that I was talking to someone in person who is going threw the same thing we are! They seemed to really like our church and I'm praying that they will accept the position.

The older kids are doing summer enrichment through our schools for the next four weeks. Both kids will go to our church camp for a week but different weeks. My baby is going to teen camp! YIKES! I know they will have a ton of fun. This week is VBS also so they are keeping busy. Last night Spitfire fell asleep during the music at VBS. So that's whats going on around here! Hope your all doing well!

Sweet Video!

Dealing With Fevers, Again!

Here we are with high fevers again! We were up all night because this mama could not sleep with the thought that Twink could have a seizure in the middle of the night and need me. Daddy didn't get much sleep either because he was getting medicine for her all night.

I put her to bed about 8:30pm full of Motrin and went and checked on her at 10:30pm. She was hot to the touch. So I took her out of her crib and she slept with me, or should I say laid on me awake most of the night & early morning. We were alternating the Tylenol and Motrin and neither were bringing her fever down under 100.5*F. At one point about an hour and a half after the Motrin Lia spiked up to 102.4*F. When her little body starts to shake (rigors in nursing terms) it makes this mama really nervous. I can't stand the thought of another seizure and losing everything that she has gained in the last two weeks. Right now we are just praying. I'm sure if she was going to have another seizure due to a fever she would have had it by now so we are just watching her closely. I do believe that she is cutting a two year molar (reason for last fevers) but I thought they usually ran low grade fevers with teething! I don't think she knows what low grade is! LOL I'll keep you all posted.

What A Week!

I must say that I am glad that last week is over! I don’t think I’ve been that busy since our trip to China. LOL Between doctor appointments, house hunting for our pastor to be, friends and family in town (sad to see them leave) we were some busy people.

I believe I’ve already updated you all on Twink’s appointments so there is no need to repeat myself. She is going in on the 22nd to have her ears drained and possibly have tubes put in. She will also have her sedated hearing test at that time. I’m thinking of asking to have the blood work drawn to see if she is at risk for more stokes while she is sedated. I’m praying this is the last time she’ll have to be sedated.

Twink only had one therapy last week and it gave her a much needed break. We have seen some huge break throughs with her this week. She is giving kisses when asked and also free will, she is stepping over things, she is using her right arm more and more to stabilize things, she is crawling with both arms, she is SPEAKING boo, uh-oh, ding-dong (ing-ong) and her favorite ga-ga. I’ve noticed a pattern also with her behavior. She gets very upset if we do not get her food or drink fast enough, during bath, and during changing time but that is up and down. Oh lets not forget if I tell her no and she REALLY wants it. I think we have had a really great week!

The Counts sister and brother both came from out of state with their families for a visit. We were lucky enough to spend two days with them. The kids had so much fun together and it’s always hard for my kids to say good bye to their cousins.





On Sunday we had Twink dedicated at church by our very special friend who moved to Florida last November. He was up officiating a wedding and agreed to do Twink’s dedication. He and his family are extremely special to us and we miss them immensely. We were lucky enough to have them over for dinner Sunday evening. Our children love to play together but hate to say good-bye as do we!

This week is much quieter other than I drove the kids down to our church camp for the day on Monday. It was a day filled with fun activities for the kids