Wordless Wednesday

There really were no words to describe the outpouring of love and support on "Caleb's Day."

Link up with Wordless Wednesday here or here!

God is growing me...

What a crazy busy couple of days! Today is the first day that I actually have no appointments and nowhere to go {other than church}. Saturday turned into an absolutely amazing day {all things considered}. Our small town came out and showered Caleb's family with so much love and support... they were completely overwhelmed. Afterwards, I was able to deliver all the great cookout foods ladies from our local MOPS and ELC programs brought by and stayed to help serve the family. It was so humbling to be able to do what we could for this great family so they could simply get through the day receiving the love and support of their family and close friends. I will post more pictures of "Caleb Day" on my Wordless Wednesday post.

As for our household, Princess JF seems to be on the mend! Several people have noticed a distinct change in her appearance and the fact that she is even starting to look like herself again! Hallelujah! We haven't had a meltdown in almost a week, and her aggression has been replaced with tears... lots and lots of tears. I talked to her therapist on Monday who said that she has noticed improvement even in the past week and she seems more like the girl she knew back in January. Princess JF spent her time in the play therapy room cleaning and organizing things... typical for her and what the therapist expected to see from her. The therapist also told me that the tears are normal for anyone on anti-depressants {it confuses me as to why you would give a depressed person medications that cause mental instability?}. Anyways... we are overjoyed by her progression and continue to pray that everything once again returns to normal!

The Lord himself goes before you and will be with you; he will never leave you nor forsake you.Do not be afraid; do not be discouraged.

~Deuteronomy 31:8

Finally, SuperDad said I must share my "life-changing" experience from yesterday. First off, you must understand that I do not typically like to be touched. I am not a hugger and, other than SuperDad, do not like people even sitting too close next to me. Now, I do try very hard with my children and can handle short hugs from them or allow them on my lap, but if they are "clingy" it can be too much. {Yes, sensory processing disorder sounds very likely in many areas}. Nevertheless, when Caleb's dad called SuperDad and I over to talk on Sunday, you can imagine the thought I had when he presented me with 2 gift cards to Massage Envy and asked me to accompany his wife there this week. "Oh, I am fine with you taking her!" "No, I want you to take her... you need it too!" So, I stopped by our local Massage Envy and explained the situation and asked about special massages for fibromyalgia patients {for Angela}. Later that evening I called and scheduled the appointments and we went yesterday afternoon.

Now, I must admit that I was very apprehensive. I did not feel comfortable getting completely undressed for someone, especially when she is going to be touching me. But, I went in with an open mind and did my best to relax {she had to remind me several times}. Once she began and started finding knot after knot she told me I really needed a deep-tissue massage and she did some of that on my shoulders. As she worked her way over to my arms I was a bit more relaxed. It took a lot of "mind-over-matter" at some points but I did it! I got through my first full-body massage! This is huge for me! And, other than a bit of pain in my neck {literally} I feel great today! Of course there are still many of knots to be found but she was able to work on several. I almost think I could go back if given the opportunity! And, actually, the whole time I was there I kept thinking of how much SuperDad would like it. One of these days I would like to send him... he totally deserves it! <3 And, on a final note, the ladies there were all so awesome and even comped Angela's visit so that she could use her gift card to come back... and, more importantly, gave her a hug and said they would keep her in their prayers! We had a great, relaxing time and I pray that she feels better just getting away! =)

Who doesn't need a vacation?

This is a Sponsored post written by me on behalf of Hiltons of Branson for SocialSpark. All opinions are 100% mine.

After the past few months around here, who doesn't need a vacation? With a family of seven and a variety of ages, finding somewhere to go and keep every one entertained can be a difficult task. We check out every great spot from coast to coast. Being a family that loves music and scenic views, Branson, Missouri is a viable vacation idea when brainstorming.

How fun would it be to combine a nice getaway to the scenic waterfront of Lake Taneycomo with some groovy music? The 70’s will come alive in front of your eyes on May 13th at the Branson Tri-Lakes Center. Your favorite groups from the disco era, the Village People, Maxine Nightingale & Janice-Marie, will be performing 2 hours of their pop culture hits, songs like “YMCA,” “In the Navy,” “Macho Man,” and “Boogie Oogie Oogie”. And after the curtain falls, your favorite performers will be staying after to sign autographs and take pictures with the fans.

And after you’ve grooved the night away with your favorite 70’s icons, head back to your comfortable room at the conveniently located Hilton Promenade at Branson Landing. Your Hilton Promenade Village People Concert Package includes two 70’s Supershow tickets –featuring Village People, Maxine Nightingale & Janice-Marie and one-night stay at the beautiful Hilton Promenade. Packages are starting at $219.00 for two people.

Recover from a long night of working the dance floor, in your plush Hilton Serenity collection bed, which includes a pillow topped mattress, down comforter and luxurious 250 thread count triple sheets. You can kick up your feet and upload the pictures of your wild time-traveling night with the Hilton’s high speed Internet access.

Also nearby is the Hilton Branson Convention Center Hotel which features one and two bedroom Branson condos with floor to ceiling windows with balconies, microwaves and small refrigerator, ideal for families and friends.

Plus, Historic Downtown Branson is only 2 blocks away and Lake Taneycomo is within walking distance of either hotel. Silver Dollar City is only 9 miles away and the Theatre District is even closer at only 5 miles. There is plenty to do to keep everyone entertained long after the Village People have left the stage.

So, as I sign off with visions of SuperDad performing "YMCA" in the streets of Galveston, Texas on our last family vacation there... what is your favorite Village People song or memory?

There's a place where we'll see your face again...

I remember distinctly the day I heard of Steven Curtis Chapman's loss of his daughter. It came just 7 short weeks after we lost our precious Baby Reagan. The pain was unbearable to fathom. Even as I was still suffering from the loss of my unborn baby, I could not imagine the pain this family was going through. They had been able to hold their daughter... dance with her, talk to her, play with her, and truly bond with their child. My baby had just begun to flutter and I was the only one that felt that movement. I had bonded with my child but I had yet to hold my baby outside the womb. I felt the pain was different and yet the same. The loss of a child is something no parent should ever have to bear.

The Lord is close to the brokenhearted and saves those who are crushed in spirit.

~Psalm 34:18

Tonight {this morning} my heart is beyond burdened for some precious friends. As I had to explain to my 5 and 7 year old princesses what exactly Heaven was and how their sweet friend Caleb would be going there soon, Caleb's parents had to explain it to him. On Monday they were given news that they had between 4 days and 4 weeks with their amazing son. They knew on Tuesday that Caleb needed to understand the homecoming he would soon be celebrating. "Why?" and "I don't want to die," he said. Even as an adult I ask the same question, "Why? Why this precious 5 year old boy?"

As I explained to my {already emotionally sensitive} 7 year old Princess JF, her first words were, "No, no, no, Mommy! Why?" I couldn't hold back the tears. I did not know the words but explained that God always has bigger plans. "But, Mommy, I want to go meet Jesus with Caleb!" As I held her tight I told her that I selfishly wanted her to stay here with me. She cried and cried as my 5 year old joined in. After a while she quietly said, "His mommy is going to have a beautiful place waiting for her. But, Mommy, she is going to have to wait so long." "Yes, she has to stay here and take care of Caleb's adorable brother. Caleb is playing in Heaven's playground with our Baby Reagan and is going to be an angel watching over his family." "And us too?" "Yes, Baby Girl, us too."

It was so hard to explain, and yet I knew that Caleb's parents had a much harder chore. My heart aches as my logical, analytical brain continues to make sense of it all. I know that I can't. We are not here to question God's will, we are simply to put our faith in Him and believe that He will never leave us. I am not angry, but sad. I do not question, but yet I seek His face. I am confused, yet I find peace in God alone.

Trust in the LORD with all your heart and lean not on your own understanding.

~Proverbs 3:5

Our entire city will celebrate Caleb tomorrow as the town has declared it "Caleb Day!" We will celebrate the opening season of baseball season in his honor. The town will be covered in yellow and black. Caleb was to have a police and fire escort and then throw out the first pitch, but asked his best friend to take his place. Several yellow balloons will be released into the sky to greet Caleb in Heaven. Donations will be taken up throughout the week. I have begun collecting food for the family to fellowship together tomorrow afternoon. A neighboring city is home to the MLS soccer club, FC Dallas, and they are honoring Caleb during half-time at today/tomorrow night's game. Although we all prayed Caleb would be here to celebrate with us, we know he has a majestic view and a pain free new body.

Rest in peace sweet Caleb. I rejoice in knowing you are resting peacefully in our Heavenly Father's arms and you are no longer in pain. Your time on earth was short but your lasting impact on all those around you is forever. We love you!

I took this picture Thursday morning when I was able to visit Caleb at the hospital. His dad turned on "I've Got a Feeling" for him and he began to do a little dance and tap his fingers. It was a precious moment I will forever hold dear to my heart! :)

Still playing catch up...

I have been trying to get on and update for the past week, but it has been all about catching up, adjusting, and, honestly, sleeping (lack of sleep from the week and bad toothache/root canal for me).

Princess JF was discharged from the hospital last Monday, March 14. Princess JL and I picked her up from the hospital and brought her home. She was quiet the entire ride home and even slept half the way {naps are always a rarity with her}. Monday afternoon and evening went off without a hitch and we were all good until Tuesday morning. As the three youngest princesses got back into the groove of being home together (we were on Spring Break), Princess JF became a bit wired and I asked her several times to calm down a bit. I used the "1-2-3 Magic" method the hospital had advised us on and it had no affect on her. Finally, after the third attempt at a peaceful time out, Princess JF went into "meltdown mode." She once again began kicking, scratching, biting, cussing, and hitting me. I handled it as well as I could for about 20 minutes before having the older kids call SuperDad. He came home and it took us another 40 minutes or so to calm her down. So much for the new medicine and higher dose of Lexapro... things were still the same. The following day we went to the psychiatrist and were given the go ahead to begin weaning her off the Lexapro. Last Saturday she took her last dose! One more medicine to go!

I would love to say that was our last meltdown, but there have been more. We have been able to catch several before they got started, but there have been at least three more since then. The aggression is not as bad, and I take that as a step in the right direction, yet the episodes seem to last longer. Most of what Princess JF does now is cry... continuously! And it is not a quiet sob, but more of an all out wail. It wouldn't be so bad if crying wasn't just one of those things that I just can not handle well. Plus, it can be completely unprovoked or over dramatized. Alas, it is better than the demonic features we were seeing before. We are trying to continue to patiently wait for the weaning of the second medicine and are prayerful we will get our "old daughter" back.

I have been told over and over by various people that Princess JF looks different and is not the same child she was even back in January. I must agree and have told the doctors this. SuperDad and I are grateful that both our psychiatrist and play therapist agree that there must have been some "fluke" in the way our princess had a neurophysiological reaction to the medicine. Although neither has ever seen this type of reaction in a child, they are in complete agreement with us that she needs to come completely off all medications so that we can see the true child within. After another 45 minute battle with my princess yesterday, leaving me bruised, scratched sore, I am more than ready to find Princess JF's inner core... the one SuperDad and I raised to love God and to love people.

And, before I sign off, as I continue to pray for my own children, my heart has more than ever been with some dear friends, the family of Caleb Huffines. Please continue to lift this precious family up in prayer as they transition into a difficult walk of their journey.

Is any one of you sick? He should call the elders of the church to pray over him and anoint him with oil in the name of the Lord. And the prayer offered in faith will make the sick person well; the lord will raise him up.If he has sinned, he will be forgiven. ~James 5:14-15

The Longest Day...

Yesterday was great! Lunch went well with Princess JF when they allowed SuperDad, both princesses and I in together {typically only two people at a time}, and my parents were able to watch the younger two girls while SuperDad and I went to a class. Then, we let my parents have the evening visit while we spent time together with the girls playing outside at the House. Dinner was served by an amazing group of people at the House, and we were able to make new friends through the ministry we were blessed by. All in all... perfect day!

Well, Sundays typically start with some great fellowship and praise at church. This morning we awoke once again in Ft. Worth at the Ronald McDonald House with a crick in our neck and pain in our back. We have decided that Sleep Number Beds are not the marriage savers the commercials claim to be! SuperDad and I are miserable after sleeping a few nights on this thing! But... on to other news.

The morning started normal enough... considering... with breakfast down in the great, stocked kitchen we have access to here. After breakfast we spent some time getting things together to go the hospital. Although, it did feel a bit rushed since the time changed over night and we lost an hour somewhere. We arrived at the hospital for Princess JF's lunch, where SuperDad and I switched off after 30 minutes so we could both see her. She was still a bit more hyper than we are used to from her, and acting a little silly, but still so good to just spend time with her. She was excited because her favorite nurse had just finished painting her nails for her and had done her hair that morning. She had also changed rooms since a new girl had come on the floor and the girls had to move to a bigger room. She liked the bathroom better and was grateful for a change of scenery. Overall, lunch went pretty good.

SuperDad and I now had 2 hours before one of us had to be back for another parent education class, so we set off to find gas and food. Ugh... by the time we found food we had 20 minutes left before we had to be back! It is so frustrating not knowing anything about the area and driving around aimlessly. Needless to say, SuperDad dropped me off at the hospital, went to grab gas at a place we passed on the way back, and set off to find Happy Meals for the girls! Two hours seemed to have come and gone in a flash!

After an hour and a half of some boring video I had to sit through, I finally got to spend some time with Princess JF! Her doctor had ordered an hour pass for the evening visit, so we grabbed her shoes and went downstairs and outside to wait on SuperDad and the other two princesses. When they arrived I noticed that Princess JR was crying, crying, crying. I was afraid she would upset Princess JF so we stayed outside and SuperDad and I traded back and forth trying to calm her and keep her busy. We began to notice that she wasn't using her right arm... at all. Seriously? Well, we're already here... might as well have it checked out!

SuperDad took the older two girls back upstairs as we finished our hour and they played games and such while I went to the ER downstairs! After 2 hours, with Princess JR screaming, crying, screaming, crying, we had x-rays done and found that there was no break! Yay! BUT... there was what they call "Nursemaid's Elbow." Apparently, toddlers have so much "play" in their elbow joint that it can "easily" become dislocated {5 kids and we have never had this happen!} It typically happens when someone is holding their hand and they trip... just pulling the bone out. In this case, Princess JR must have fell just right and just hard enough to knock it out of the socket! Really? AAAAAGGGGGHHHH!! Ok, doctor sat down, took her arm, gave it a tug and twist, felt it pop back into place, and voila! She almost instantly stopped crying and began using her arm again. First thing she said? "Eat!"

Breathe in. Breathe out. Back to the RMHFW for dinner. Upstairs to get SuperDad and Princess JR ready to leave. Began cleaning and preparing for discharge tomorrow {prayerfully}. Waiting on laundry now and beyond exhausted! Princess JL has already passed out on me! So, SuperDad just called to let me know they made it home ok. The older two kids just got home. Laundry is almost done! Time for bed! Sigh! Breathe in. Breathe out.

Special thanks to a dear friend when he made he smile by simply stating on Facebook this evening: Y'all are giving me a new appreciation of 1 Thessalonians 5:17, "Pray without ceasing" :-)

I told him that we are just doing our best trying to keep everyone on their toes! o.O

And one quick praise report! We have met a few families while staying here at the RMHFW an one that I mentioned in may last post, Jozelyn. This family received heartbreaking news last week when they were told 13 year old Jozelyn's Leukemia had mutated and come back after a year in remission. Well, when I saw her family tonight they were in much better spirits! Her grandmother told me that the doctor came in today and told them that he didn't know how, and it was nothing short of a miracle, but Jozelyn's Leukemia is in remission... after only 4 days! We know why... and they are giving all the praise and honor to God! I was so happy for them I began to cry! LOVE seeing God show up like that! Continuing to pray for similar miracles!

Family day!

Today was all about the family! It was great having us {almost} all back together. I love my family!

First things first though, I had an 11am meeting with the Family Therapist {lots of questions about family history... 3 generations back... as well as persistent questioning about my own sanity} to discuss our treatment plan. The doctors have suggested a Partial Hospitalization Plan since they have seen nothing but good behavior. This would mean that Princess JF would be discharged to us, but we would have to bring her to another nearby facility every weekday from 8am-3pm {for the next week or two}. Then, she would come back with us for the evening... so, basically, similar to her normal school day. "Well," I started, "her meltdowns are typically around 3:30/4:00pm. What happens if she has a fit while I have her?" Then you would just need to tell us the next morning. "Hmmm... I do not understand how that helps? That would bring us back to the reason we brought her in." So... SuperDad and I have discussed this and prayed a bit about it... but not too sure it is our favorite option.

Right after the meeting, SuperDad and the rest of the kids drove over today and got to spend time with Princess JF. When I saw our Princess for about 20 minutes with the therapist, I noticed that she was acting a bit "silly." She was unfocused and being a little rude {the therapist had to remind her of manners a few times} unlike yesterday. I mentioned it to him and asked what he thought about bringing the other kids in today and they all agreed it would be ok. I was worried about a possible meltdown if she saw them, but then the doctors could see and understand our concerns. SuperDad came in with the older 3 while I took Princess JR for a walk around the hospital. Afterwards, SuperDad told me about how lunch had gone. Apparently, Prince W annoyed Princess JF a bit with a something he was fidgeting, so she snapped at him. Also, Princess JL was coughing when JF told her that if she didn't stop she was going "to kick her booty" {but in not that nice of word choice.} Finally, when they had to leave at 1pm, Princess JF pushed JL away from the door and blocked it so they could not get out. One of the nurses had to come assist so they could leave peacefully. =(

The evening visit went a little smoother. She was back to being in a better mood like she was yesterday. I did feel awful when it came time to leave since we had spent an hour in a required class and I had little time with her all day. She got very sad tonight and wanted to come with us. Apparently seeing everyone today made her homesick. Praying tomorrow goes better.

Tonight I at least have company here at The Ronald McDonald House. Princesses CJ & JR, as well as Prince W are with me, while SuperDad and Princess JL went back home for the night. They will be back up tomorrow after work and school... and my two teenagers will make there way back towards our part of town to spend the weekend with CJ's Prince and his family. Continuing to pray that things improve for our baby quickly. In class tonight we learned of another family experiencing the same thing with their son, and even though I hate to hear of others going through similar meltdowns, I am relieved to know we are not the only ones.

Our specific prayer requests tonight:
- Continue with same medicine? Try a new one? Completely wean from all meds?
- Try the PHP mentioned above or continue with current facility.
- Safe travel to and from home and hospital... as well as safety while we are all apart this weekend.

And please continue to pray for the other children in her ward... as well as for 13 year old girl whose grandmother I met today. Jozelyn has been in remission from her Leukemia for quite some time now, but Monday they got news that her Leukemia has mutated and returned with a vengeance. She is on her 4th chemo regimen and there are only 5 to try. Jozelyn loves the Lord and says she is mad at Satan for bringing her cancer back. Please lift this family up! They travel here from Odessa, TX and my two smallest princesses played with her little sister for 2 hours today. Their story broke my heart and I promised to keep praying for her! <3

And, last, but most certainly not least, please continue to pray for sweet Caleb! His parents have listed specific prayer requests this evening and he is always on my mind. <3

"I will praise the LORD, who counsels me; even at night my heart instructs me. I keep my eyes always on the LORD. With him at my right hand, I will not be shaken. Therefore my heart is glad and my tongue rejoices; my body also will rest secure..." ~Psalm 16:7-9

Prayer Warriors Unite

There are at least 4 families I follow everyday as they journey through their own children's battle. Please join me as we pray for each of them...

Caleb Huffines: On October 10, 2010, Caleb was diagnosed with a Diffuse Intrinsic Pontine Glioma, which is a malignant inoperable brain tumor inside his brainstem. He is such a courageous little boy and well-loved by all who know him. {I met Caleb and his family through our local MOPS program and we recently moved a street over from his family. My older two pet sit for them and we watch his baby brother when needed. I put together a design for them to use on apparel and such for fundraising and they are very dear to my heart}.
They were recently given news that the tumor has begun growing. Praying without ceasing for this sweet family!

Luke Steinmann: Luke had an arteriovenous malformation (AVM) rupture that caused a car accident on December 28, 2010. We know the family through a local homeschool co-op we used to attend. Luke is battling a very serious blood infection as he surpasses day 70 of his journey. Praying...

Kate McRae: Kate was diagnosed with a very malignant, aggressive brain tumor called a supratentorial primitive neuroectodermal tumor or sPNET in July 2009. I first read about Kate after a Facebook post by Bart Millard of MercyMe. Kate has just begun another round of chemo and radiation as 2 more tumors have developed. Prayers lifted up...

Jacoby Brown: On October 24, 2010, Jacoby's doctors found a large mass on his abdomen, a cancer called Neuroblastoma. Jacoby was 33 days old. A couple at our church introduced our youth group to Jacoby for prayer. Baby Jacoby is having great difficulty with feeding issues. Continuing to pray for his tiny body.

And, finally, for all those on Princess JF's floor with her tonight and throughout her stay... I pray for complete healing in each of their young minds and bodies. In Jesus name, Amen!

“Again, truly I tell you that if two of you on earth agree about anything they ask for, it will be done for them by my Father in heaven. For where two or three gather in my name, there am I with them.” ~Matthew 18:19-20

Update from Fort Worth

SuperDad and I are overwhelmed by all the support! When I was able to spend time with Princess JF today and tell her that 100's of people are praying for her all over the place she smiled and was delighted to know she was covered in prayer! Let me try to catch everyone up to where we are today.

I must say that admitting your child to a psychiatric unit is no easy task. SuperDad and I have shed many tears and prayed many prayers over this. We now ask for prayers as we try to make the best decisions for her continued treatment both in and out of the hospital. I received a call on my drive to the hospital today from her nurse asking for permission to add another medicine to her treatment plan. This particular medicine is supposed to stop the voices she says she is hearing in her head. The Dr also doubled her Lexapro {again} saying she was still on a very minute amount. SuperDad & I are still not completely convinced that Lexapro isn't the culprit of the recent behaviors... so we need prayer about what to do about that medicine. We understand that she has a possible serotonin imbalance requiring the use of this particular type of medicine, we simply are not sure if this is the correct one for her. Please continue to pray for wisdom!

We also had a huge praise when I received another call on my way to the hospital {yes, it was a very long drive} from our assigned Family Therapist that informed me that we would have a room waiting for us at the nearby Ronald McDonald House! This was exactly what we had prayed for since finding out they had one nearby. The hospital is only one block away {I walked to and from today} and the insurance is "supposed to" cover the cost {prayerfully}. Princess JF was excited to know that I could still be so close to her even though I could not stay in the room with her.

And, as for Princess JF, she had a pretty amazing day! I was able to see her for an hour at lunch {12-1pm} and then 4 hours in the evening {4-8pm}. In fact, I watched her eat lunch, dinner, and evening snack. I made sure she brushed her teeth for bed. She & I read a book together and watched a little bit of a movie before she was ready for bed. She fought her tired eyes to do her best to stay awake until 8:00pm! At 7:55pm, I walked her to her room so that she could get ready for bed. We talked about tomorrow and then prayed over her precious mind and body. I kissed her good night and she went to sleep.

Princess JF's entire demeanor was once again transformed back to a similar rendition of the daughter we used to know! She actually crawled up on my lap at one point and wanted to cuddle {touch is not a strong love language for her}. We played board games, put puzzles together, and just talked all evening. It was great! She talked of the other patients on the floor with her. She spoke about her favorite nurses. She could not say enough about how much she liked school that morning and told me all about what she had learned. She showed me her room and her bathroom. We looked out her window to try and see where I am staying but it was behind the parking garage. Everything seemed so surreal and perfect. Yet... I know it has only been about 24 hours since we had her moved and things are all a process. The changes we are seeing now may not truly represent what we will see in a few days or once something triggers her anger outbursts.

We have asked the nurse if they are going to try to provoke her anger at any time during her stay. My sister even mentioned to me how she can listen to us tell her what happens, but until she witnessed it herself she was not fully aware of what we are experiencing. We would actually like the nurses, staff, Dr, someone here to see what it is that happens when this "Roger" she speaks of takes a hold of her poor body and mind. I guess we will see as the weekend approaches how they will go about that.

For now, SuperDad and I are feeling encouraged and hopeful that we may soon have our daughter back. Although she may not come back to us at 100%, we are eager to get her back home and on the proper road to recovery. The past few months have been quite a journey but we are faithful in the One we know as a Mighty Healer!

This is where we're at....

I have been asked for specifics in prayer requests and am not afraid to let others know what is going on. I want people to understand that my daughter is not crazy, she is suffering within the confines of her own mind. Thus, these are copied and pasted from emails I have been sending to my Prayer Warriors:

Friday, March 4:
Sometimes I wonder if this is how Job felt... because I keep wondering why Satan wants such a strong foothold in our lives! :(

Let me see if I can break it down day-by-day:

Monday: CT Scan for Princess JF - everything came back normal! =)

Tuesday: Gynecologist with Princess JF - diagnosed with Lichens sclerosus (skin condition requiring topical steroids for a month & check up every 3 months)

Wednesday: Pediatrician with Princess JL (diagnosed with strep); ER in evening because fever up to 105.6 all day (stabilized fever with more Ibuprofen and sent us home)

Thursday: ER (a different one) with Princess JL due to to 106.9 temps, lethargic, dehydration, cough (blood work & x-rays showed no strep or flu; viral infection; inflammation in chest causing asthma flare up. Given steroids and put on breathing treatments and an inhaler) Hmmmm... these are the tests we asked for the night before! :/

Friday: Princess JR has very runny BM's and fever of 103; No Dr or ER (yet... have called and been told what to watch for)

Weekend update:  Both younger Princess continue with fever, meds, breathing treatments... taken Monday morning and both diagnosed with ear infections on top of the viral infection upsetting their asthma!

Sigh... ok...

Our biggest prayer request: Princess JF had a "fit" of all fits today (she has them daily now). She had one yesterday as SuperDad and I were headed out to the hospital so we had to take her to my parents. Today was beyond bad. She was completely unprovoked and just started throwing things. It progressed into her telling me her name is "Master of Evil." I am not her mom. She was going to gouge my eyes out. She began using curse words. She spit in Prince W's face. She was calling us all sorts of names. And at one point she asked Princess CJ to go get her a knife because she was going to kill me. When she goes into her fits her voice gets deeper, she loses all eye contact, her entire demeanor changes, and she claims to not know us and repeatedly says she wants to go home. She also becomes VERY combative and it takes everything SuperDad and I have to restrain her so that she does not hurt us... and most importantly herself! We have had to learn to lock the microwave because she has tried repeatedly to put metal into it. More scary is that we have had to put all our knives and scissors away because we have butcher knives in random spots and due to her threat to kill us. I can not even begin to explain what it is like everyday for us as a family when these fits happen... normally everyday now and typically for over an hour.

We could not get a hold of her psychiatrist and did not know who else to call so I called my sister (she works for a doctor who deals with psychological issues and actually helped us get into Children's in January. Her doctor suggested removing her from our home for the weekend (our other option was going straight to Children's to have her admitted). If she can do fine all weekend at my sister's (without us in the picture) then it is most likely the medicine she is on causing these reactions. This is actually our prayer! It would be easier to change medicines tan to realize this is something wrong with her brain that we will have to deal with... forever! So, we will see how the weekend goes... and if there are no fits then we will talk to the psychiatrist on Tuesday (our regular appointment) about stopping the meds. (We can not stop this type of medication abruptly... it must be weaned and under a doctor's care). We would really just like to have our daughter back. She has no recollection of most of what happens... and after the fit seems to stay in a bit of a trance for a while.

Monday, March 7:

After spending the weekend with my sister we went to pick Princess JF up and after about 15 minutes she was already "set off" by something. SuperDad and I left my sister to handle it while we listened at the door. Although she wasn't as combative or quite as loud with my sister, Sis still had to restrain her at times and at one point Princess JF heard Princess JR crying down the hall and got even more angry. She kept calling her "stupid baby" and then decided she needed to find some scissors to go kill the "stupid baby." Once she finally started coming down from the fit she asked if we would call 9-1-1 to get her help. There was some man named Robert in her heart that would crawl up to her brain and pour poison on it to make her angry. At that point we knew we had to take her in.

We took her to Children's Legacy hoping to get admitted there. Unfortunately, all the area psych units were full, so just after Midnight last night Princess JF and I were loaded into an ambulance and she was transported to a hospital in Arlington. SuperDad met us there and after filling out paperwork and answering questions for over an hour, we had to leave our baby there sleeping. SuperDad and I have cried and cried from that point on. It was so hard to do but we know it is the only way we can get her the help she needs.

We are praying that it is the meds causing the reaction, although we are unsure at this point. We have asked for the meds to be stopped and her psych has agreed. There has been talk of possible bi-polar, but again, we are not sure what the official diagnosis will be.

Please pray for Princess JF as well as our family as a whole. We go in for family therapy on Thursday morning, and are hoping she is not there longer than this week. Our only visitation times are an hour on both Tuesday and Thursday. I miss my baby so much and am completely broken by this all. We have nothing but God and the prayers of others holding us up through this wilderness.

Tuesday, March 8 (oh what a difference a day can make):

Ok... where are we today?

Let me begin with what has us concerned:

We were about to eat dinner last night when the phone rang and all I could hear was Princess JF crying on the other end. She told us several things that concerned us. She said she had been in her room most of the day without being able to see anyone else except for eating and class time. She was not allowed into the day room. She also mentioned getting shots (not just blood drawn) and sleeping most of the time in her room (Princess JF is NOT a napper by any sense of the word... she is always active). She also mentioned that they were very rough with her and that she is scared it will be worse tomorrow. She felt as though they were not helping her and begged us to take her to another hospital (she desperately wants help and knows that they are not doing so). She cried the entire time we were on the phone with her. I simply CAN NOT leave my child here. I am completely uncomfortable with what she has told us and know her well enough in her normal state to know she would not be so upset and crying otherwise. At one point she said she just wanted someone to hold her hand and no one would. This simply breaks my heart.

Also, the Dr at the current hospital has made no effort to communicate with us. We have no idea what the treatment plan is or what is going on. Our psychiatrist also tried to get in touch with him several times yesterday and said she was finally able to talk to him today. She informed us that he has diagnosed Princess JF with psychosis and depression. Our psychiatrist told him that she was never depressed before and is only feeling that way because of the care she is receiving at this facility. He has also apparently added a new medication to her regime {without our consent} and continued the Lexapro that our own psych had ordered Princess JF off of. Of course we knew nothing about this treatment plan and it has been over 36 hours since she arrived.

I began emailing Doctors and hospitals last night and began calling intake coordinators first thing this morning. We had to wait until rounds were made and children were discharged... or not. Children's still has no available beds until Thursday {that would be our first choice}. UBH in Denton thought they were going to have a bed, but that poor little girl was not well enough to be discharged {continuing to pray for her still}. Cook Children's in Ft. Worth really wanted to be the last resort themselves because of the distance... but they were the first ones with a possible bed.

Thus, we have initiated the transfer on our end with the current hospital, but the Dr over Princess JF's care there is not yet cooperating with our transfer. We have several calls into his private practice as well. SuperDad & I were already heading to Arlington around 4:30pm anyways for the first visitation hour of the week tonight at 6:30pm... and I told SuperDad I do not want to leave there without my daughter tonight. :(

Please continue to lift our family in prayer. Princess CJ, Prince W, and Princess JL truly miss their sister and our home is miserable. SuperDad and I are broken and disgruntled due to the level of care our child is receiving. Princess JR is too young to understand of course, but I am sure she will rejoice with us when Princess JF comes home!

Praise Him In This Storm

Wow! Where did February go? This past month just flew right past me and looking back it seems like such a blur! But, we do have a few praises from the weekend... hence the awesome song by Casting Crowns, "Praise Him in This Storm."

First though, Saturday morning we experienced one of the longest "fits" thus far. We were doing some rearranging of rooms and beds within the house to try and make things "flow" easier and made sure we had "all hands on deck." Well, Princess JF refused to let Princess JL help in their room {causing little JL to be very sad}, and then JF screamed at Baby JR. This scared the baby so bad that she ran to her Bubba {which she never does} and just held on tightly to him. It made me so sad, and yet frustrated again with this "issue" we are dealing with. Eventually all this anger led to a complete meltdown that lasted for over an hour! It took both SuperDad and I to hold her down to keep her from hurting us or herself. She kicked the gate at the bottom of the stairs down right on top of my shins, just after head butting me in the chin. She also proceeded to scratch SuperDad's neck, bite his arm, and just repeatedly hit him. We did not want her to hurt herself {she had earlier through herself on the floor skinning her knee} so we felt we had to restrain her. We did all we could to keep her in a recliner and realized then how strong she was. It was such a tough thing to do... and both physically and emotionally draining.

Nevertheless, we were able to make a turn around on Saturday afternoon. After a late lunch we took the kids to Sonic Happy Hour and met my mom at our local lake park for a walk around the nature trail. Although Princess JF seemed to be in a bit of a daze the rest of the day, we were able to finish the evening with no more major mishaps! This was very encouraging to us as a family.

By Sunday we were beginning to notice some triggers and were able to continue diffusing them before they could get her going. Princess JF went to Sunday School without complaint, and we were able to go to our LifeTeam meeting that evening without much worry since she had been in such a good mood that day! I do not know if it is the medication increase or something else, but we are praising God for the improvements thus far. We are still walking on pins and needles waiting for her to explode, but are relieved to have seen "normal" days such as these.

Actually, now that I think about it, today was even better than yesterday! Princess JF had her CT scan this morning {results coming in a few days} and then came home for the rest of the afternoon. She had no apprehensions about the scan, was decently behaved at the hospital, and got along well with her sisters throughout the afternoon and evening. Last week's events seem so distant after the past few days we've had, but, again, we never know when things can change... thus we praise Him through every step of our wilderness! {Exodus 13:17-18, 21}

Finally, I have gone through such a myriad of emotions just this past week alone {as we marked one week of these new behaviors on Sunday}. I began sad, as well as mournful, for the Princess JF I used to know. Then my guilt began to grow knowing that I myself have anxiety issues, OCD tendencies, Sensory Processing issues, and the like. SuperDad's family has a history of ADHD, but I know that I am most likely carrying the genes for most of the other mental disorders. I have apologized to SuperDad numerous times and he assures me that it is not my fault... but as a mother I am broken. But then, all I have to do is listen to the words of my amazing family and  friends and KNOW without a doubt that God has knitted Princess JF together in my womb just as He wanted her... and she is perfect in His mold! {Psalm 139:13-14} She is absolutely beautiful and I will continue to love her just the same! And the other feeling that has now emerged is anger. This is probably the easiest for me to show simply because of my natural upbringing, but it is the one I dislike the most. I find myself mad, not at Princess JF, but at the "issue." I get frustrated and confused and it makes me angry that I can not stop it. 

Fortunately for my family and myself, we KNOW who holds our future and are sure He is holding us all as we walk through this wilderness together. Besides, thanks to a dear friend I have learned this past week  that 

There are some things we don't know about ourselves until we are put into a position where we have to see God's power working through us. ~ Priscilla Shirer, One in A Million

And just because, we took some pictures as we took our nature walk around the lake so I will close with a few of those!

Princesses JL, JF {notice the look} and JR <3

Prince W always enjoys the water

My mom with Princess JF and her "Blue Coconut Slush" teeth :D

Princess JR had fun pushing in all the little dots on the lid s

My Princess JF <3

Princess CJ and her Prince of {almost} 10 months, Prince N

A rare shot of SuperDad and I <3