Prayers needed

Last Thursday started out like any normal day... Only we ended up in the emergency room at the end of the day.
Daniel had some kind of seizure at school. Not the kind where you see people flopping like a fish on the floor like they're out of water... but the kid when you see kids staring into space unable to respond.. Daniel had this one at school where 2 other teachers and his teacher saw this one. The nurse took him to her office and he began responding to commands after 10 minutes. He was not aware of how he got to the nurses office...  As soon as he got to the office prior to that I received a phone call no parent wants to get..  After these people called me I promptly got everyone else together and headed to school.
I am REALLY glad there are really caring adults who sprung into action and kept him safe.  This was scary for all of us. Well except for Daniel who has no clue of what happened.
We decided that since he had a short period of time where he didn't respond, he was walking like a drunk sailor and his speech was sloppier we were driving to Cook's Children s hospital.  It took us the better part of an hour to get there due to rush hour traffic and road construction. YAY Fort Worth! We wait two hours to get seen and by this time Daniel's his normal BOUNCY self, although he has a weird bump on the back of his head,and is tired and has a headache  and Jonathan's alter ego came out as Scared y cat or Fret boy.... He tends to freak out in situations like this when we are in a medical setting. I don't think the apple falls very far from the tree as Andrew does the same thing and becomes not a very nice person.  So instead of dealing with one kid with an  issue now we had two. only one didn't see why everyone was worried about him.
We were released because they didn't have any space on their monitoring unit and I was told to call the neurologists nurse that we had seen on Sept. 6... It's 1230 pm and I left a detailed message at a little after 8 am.

I am asking for any and all prayer warriors out there to join us in praying for Daniel.

Thank you and be blessed

UPDATE: Daniel Will be having an EEG (1.5 hour) on December 4th.

Halloween and update

Update- Since last I posted we received a phone call from The Child Study Center in Fort Worth saying that  we now have an appointment for Jonathan on February 14th!  We got this call because somehow our mailman sent the letter back returned as a wrong address.(makes me wonder what ELSE I'm not getting).

School has it's challenges, but we are all having more good days than bad.

Jonathan was placed back on Dad's regular insurance and as soon as we choose a new pediatrician we will be getting referred to where he needs. I'd like for him to get seen by Genetics at Cooks Children's hospital.

 Thanks for all the prayers and messages of support. Thank you.

Be blessed.

6 Degrees and answered prayers in disguise

I've had a few people ask me to write here and tell you If I had an update. Up until two to 3 weeks ago I didn't have one. We had applied for a transfer to another school for Jonathan (who was going to be starting First grade). We have been patiently waiting for a spot to open up with a developmental pediatrician so we could be seen.  We have been fighting with a pediatrician who really honestly needs some retraining in patient care.(won't go into  that at length because trust me YOUR blood would boil).
About the day after I last posted, a dear friend of mine who saw my desperate, frustrated plea, sent out an email to their circle of friends and prayer warriors and made them aware of our situation.
I have to say that as I was seeing the responses of support I felt touched, if for nothing else to help my child.
We waited almost nearly the whole summer very nervously by our mail box, and by our phones waiting for a word on where our son would be attending school this year.We prayed a lot for the teachers and the principals who would be making this decision, and just give us a chance. We got our school supplies ready for both Jonathan and Daniel.  We even took our supplies for Daniel early because we were afraid we would  not be able to carry them in one trip.
We decided since we knew who Daniel's Preschool Program for Children with Disabilities(PPCD) teacher is that we would go visit her for meet the teacher...Good thing is that although it is a 2 year program and we are entering our second year, all the parents got to meet too.  We planned this ahead of time because throughout the district there was only one night to do this in.


We do Love Daniel's teacher and ask that if you do pray please do. She has her own special needs child who just had surgery and is having complications.  She also has 6 very special kids (Daniel's class) with unique needs and challenges. Please pray for the RIGHT person to come along and assist her as her assistant said Goodbye (with tears) as she was moving on to another opportunity.

On the morning if Meet the teacher...Daniel's teacher calls me. we have a very good conversation about this year. While she was talking to me my call waiting beeped and I saw a number that looked like a number from the district office. I was totally unaware of who it was because sometimes the schools use a common caller id. It was a principal. The principal of the school that Daniel goes to and she was calling to let me know that Jonathan would be joining his brother at the same school.  Oh there was cheering and dancing at our house. Tears were shed and hugs were given.
What we were not aware of was that there were more blessings that day. when we got to the school and came in (although we were told they didn't know who his teacher was going to be) They told us who Jonathan's teacher was. We all went to meet her. As first meetings go  it was like 2 cats meeting (without the sniffing). He was sizing her up totally. You could tell he was nervous. She was trying to get who he was in that little time. I felt like she was very neutral.I couldn't get a read. I took a picture with my phone of them together and although he smiled...he was still terrified.  We left knowing he was in good hands. Daniel's teacher told me about her in her perspective. lots of experience with resource and special ed stuff. we'd like her.
we  all Get home, and Jonathan is in tears. I take the time to find out what's going on. He's afraid. Afraid he'll have no friends, no one to turn to, and all the what if's he was living with because of last year with the bullies, and the falling down and everything. Desperate to stop his anxiety from taking over... I tell him to take a deep breath and tall him that he's going to have a super great year (because hope had been infused again)
That I would be there for him, that his teacher would be there if he needed something. and told him that if all else fails go talk to Daniel's teacher because she is trustworthy. He had met her before so not a hard sell.
I tell him I pray for him and a lot of people do. This quieted his fear. He became excited.

Since writing last I came down with some sort of evil thing that started with an ear infection and ended up in some kind of pneumonia. I was S-I-C-K for a month and a half.  Being sick stinks. Being a MOM and being sick and needing to still function sucked worse. Especially when it was back to school time.

The last two weeks at school have been a terrific flurry of notes back and forth, paperwork and emails and phone calls. Thank God no discipline issues so far.
Jonathan's ARD (or IEP Meeting which is called an ARD because Texas does things differently) is This Thursday. I am pretty confident due to their track record that this will go well. This also means we are a little bit nervous as well. because .we . Have. An . Invested. Interest. in our son's Education. that and last year wasn't so great.
Last Wednesday morning Andrew gets a phone call from our therapy provider for Jonathan. They were having trouble getting him approved through medicaid. After Andrew spent the next 90 mins. on the phone discovering governmental inconsistencies that no one at any level understood why it was. He found out that although our 2 younger children still qualify, Jonathan doesn't because Dad is making slightly too much (hallelujah, Thank you Lord) the 2 younger are on a Birth to age 5 program and that has different requirements.
So Jonathan was left out there and we were not made aware he was possibly in their eyes without insurance.  But with us, not so he has always been on Dad's health care. just we were limited to a tiny few health care providers and scarce care by specialists.  Now we are in the process of finding a new pediatrician who can get us to see a new set of specialists.  I found out it was medicaid and insurance that was making our lives way too difficult.
Jonathan has been temporarily taken off therapies until we get insurance back in the right place.

 Jonathan I hope you have a great year in First grade and you make a lot of friends and win more hearts than ever at your new school.

 Daniel, you've already stolen hearts, broken hearts (and blinds) have a great year and try to get as many happy behavior days as possible. You are so loved.

So that's our update. By the way Sarah misses her brothers. He asks for them by name. specifically Jonathan.
She is the shoe diva. and she will came to me, get on the ottoman with her shoes(or her brothers shoes) and will put her foot up and say shoe. she may eventually take it off and change her mind, but heh she can do that. She's in a size 7 shoe. She has a crazy sense of humor, and will de clothe herself at a moment's notice. she'll let you know someone took her diaper off as if someone  else did it...even if it was Sarah.
She is now learning to climb stairs and prefers going down the stairs to going up. We still don't know where we stand as far as her development goes. so we'll see.
 Go and Be blessed.

6 degrees and a missed connection

Everybody knows someone who knows someone...
It's been proven to a degree we're all connected. Some say by as little as 6 connections. Check facebook, linkedIn etc. we are all connected. need proof? check your friends lists. or even better see who shares your pediatrician. It will blow your mind.
This is where our journey intersects. Some people I've "met" and have been real friends with for a long time. Our friendships have been more real than some of my local friends,and although we've never met face to face...If they needed me to I'd hop on an airplane and try to be there if I could.. We've shared life. Our struggles, our victories, our sorrows, even some real secrets that not even best friends would share.

Which leads me to the thought Okay if we're all connected and know someone, why is it I feel like I'm spinning my wheels,so to speak, when it comes to finding a pediatric  specialist who can answer some questions about what Jonathan is going  through.
Someone has a great developmental or Genetics specialist who specializes in super rare genetic disorders.  Our is 21q22.11 deletion.. We've been told there are a handful of people around the world who have this "change", but he and I are the only ones that have experienced any issues that can be tied to it.
 Please Feel free to share our story. At this point we've totally hit a DEAD END.



We live by DFW airport so we would be willing to fly somewhere for a consult.
You might as well have told my husband and I that this diagnosis totally means nothing, and means that we are totally unable to talk to any specialist in the Dallas-Fort Worth metroplex....

Map

Yes,I said metroplex. Where I live there are not one, but TWO very large cities near us (almost equal distance between the two).  What I am finding is there is very surely no shortage of pediatricians in the area, There are 2 major Children's hospitals...BUT there are only 2 very little (and very full) Developmental and Behavioral Pediatricians...and only 2 genetics programs here. Dallas Children's Hospital only serves developmental peds. patients until they are 5... where they go after that who knows. Maybe someone thinks they all vanish or maybe they send all the over 5 to psychology/Psychiatry. We've been turned away from that as well due to lack of space.

I'm going to scream. For real. as of right now I think we're still on a waiting list...unless something purely diabolical happens and I just end up firing our pediatrician. That is always a good option as the one we have is HORRIBLE and their staff sucks. all this pediatrician knows to do is follow a checklist..no bedside manner at all. I've suffered through a lot of different docs... this one is in the running for the worst...okay second worst. The neurologist  we saw whilst getting Jonathan's diagnosis was BAD.

This all leaves me feeling very frustrated and feeling like the only person moving to Texas benefited was my husband. Yes, there are plenty of new jobs here, if you are willing to take the risk and move here. But if you have a child with a chronic condition...You might want to weigh your options very carefully.

Now we live another day to fight on..  Be blessed while we start at square 2 (square one has already been done),

I wouldn't Trade it

Living with  my kids from day to day. Some days are stellar. Everyone is so happy, getting along. A few hugs and kisses make everything even sweeter.
There have been more than a few really difficult days, when I've been dealing with behavior from Jonathan, trying to correct Daniel hoping he understands what he did. and hoping Sarah's development is moving along..
There is also the whole thing of therapy, and a pediatrician. Both amaze me at how frustrated  and sad I feel for my kids, who are supposed to be helped by these "professionals" and their behavior, but in the end it seems we were all born in the wrong place or born the wrong whatever. BALONEY SANDWICH.
 I can't live with any regrets about what I did was the best thing for them or not.  It's impossible to go into the past and change anything. It's not ever going to be possible.  I have to make the best decisions based on the information I have,even if it means digging for it myself.
I wouldn't trade this experience for anything because I cannot. I love these kids more than life, and if I could I would take their place if I could.
The only thing is they have to experience life and learn  to adapt to the challenges in front of them. They have to stumble and fall to learn to walk.  They have to be a little bit wobbly at first but once they learn  to balance, will find it easier to walk and run.
Yes, most days lately at my house find one or both my kids , sounding like they are learning english as a second language (because of their language delays their brain has been structured to think english is very hard).

On another note on Saturday last...Sarah took her first steps!!!!!!!! we are all over the moon... and when she did this there were instant cheers from her loyal cheering section Jonathan, Daniel and mommy. She gave me the biggest grin as she took a play vacuum and toddled off with more steps.

Jonathan is within a couple of days of losing his first tooth. For a six year old this is big. He can't wait to lose it.  He has been wiggling it with his tongue.

We have decided not to move, although we have physical challenges with the kids  and their low muscle tone(especially Jonathan) ... I've been carrying Sarah up and down 3 floors of stairs and she is getting to the point where she is too heavy.  We will be saving money to put down on a down payment for a house or another apartment somewhere else closer to Andrew's work at The Container Store. We were going to be charged another extra hundred dollars a month for the privilege of not having 3 flights of stairs to clime in 105 degree heat dragging at least one child.

Andrew is  training for a position that seems to be changing  for the second shift that is growing. He is totally loving that and that is just Andrew's personality to have him create his own position.

Daniel although it's  almost been two weeks has been constantly talking about the Birthday party he and I  attended at a place that had a bounce house with a slide. He simply can't stop talking about it.  We try not to roll our eyes too much as this was a great memory for him, but we need some ideas of other things we can do with him to create memories that will be better than the great one that he has.  Please for the LOVE of all things SANE MAKE HIM stop this ONE story.

Okay maybe you're laughing now...but realize just how blessed you are.
Blessings

My 20 minute Makeover-The Freezer-The Container Store

We live in an apartment... which means having to deal with a lack of freezer space and all of the accompanying issues associated with it.  

Being that my husband works for a company called The Container Store(c), they sell stuff that can organize your life.   This isn't my first project, but the first one that is complete.   As you can see our freezer is just like anyone else's. I cannot tell you what is in the back of  this thing and I dreaded looking for anything.

 So I took everything out and wiped it out with a Lysol wipe...I also took the liberty of tossing any out of date/expired food

 I put like items together or things that were similar together.... These items are called Pantry Binz.

 Lovely  to see I have an amazing amount of room in here now. Rest assured now no more falling objects. My toes will thank me later.

My Door however, still needs help.

Be Richly blessed

Bluebonnets, Butterflies and Cowboys

 This is Texas- Did you know that this here flower is )called the Bluebonnet is the state flower.
During the spring these flowers are seen along roadsides everywhere. I can hardly believe it still.   Just trust me on this one.  These flower pictures were taken a few days before we had a tornado outbreak...and no we weren't hyperventilating over a dust devil.These tornadoes were throwing around 18 wheeler trailers.  We had 12 confirmed tornado touchdowns. ..That was surely the scariest day a lot of us had.  It's a miracle there was no deaths in this whole event.

 We pulled over on a side road called a service road and stopped.  We then got our kids out(as you can tell we planned  this).  Sarah has never felt grass and Jonathan was seeing bugs and was terrified. Daniel is just being goofy.

 This was  By far the best one of them all. We couldn't get all 3 to look at once so we decided to take one with them all looking but with their eyes closed.  These flowers were pretty intense smelling too and I could tell we were not having fun.

 Here is what I mean by not fun and getting them to sync up just for a minute... Sarah was just getting upset so after we got some great shots, we headed home.

 April 12th, Daniel's class along with a lot of the other special needs classes in the school district had a music program to showcase the music therapy program that visits their classrooms.  This was Texas sized and Texas themed and totally done by t he students(with help from their teachers). Narrated by older students and very nicely  done.  As you can tell, Daniel is a cowboy.  To his side his trusty sidekick Mrs. D.(his class aide who he totally adores)

 Here he is before the chaos started... Everyone from his 3 year old class to the Seniors from both the district's High Schools.  We only caught a couple of real glimpses of him during the whole program but the ones we did were totally precious.

 The big thought of the night was that we were in a gym full of special kids and Daniel and all of the others just got to be kids without the labels. There were parents who got to be just as proud or prouder of their kids who normally don't get to be.  There was a whole lot of love in that gym that night.

 Daniel as a cowboy butterfly.  His class danced to I wish I were a butterfly...Most of his class is also learning to talk..

Sadly, we didn't walk this year for several reasons but we decided next year it WILL happen and we will get our act together on fundraising and get more on fire for this.
Be blessed and go enjoy the outdoors and enjoy the life you have.