They Crack Me Up!!!

I was looking through a few of our October pictures and thought these were so funny! There are more to come! These guys crack me up! Quinn is obsessed with gourds this year! I think because he learned about them at the pumpkin patch. I have about 22 pictures of gourds in my October photo files. He wants his photo taken with everything and by everything.

No hike would be complete without a soft pink baby.


"Quinn, are you seriously posing for a picture when you are supposed to be throwing the ball back into the game?"


I don't know why he is in the dryer!

If you have ever received artwork from Chloe, you can see she puts her heart & soul & fingers & hands & arms & face & clothes into it! She loves finger-painting (I use the word "finger" loosely).

A Fresh Perspective

On Tuesday night we had Chloe's parent teacher conference with Ms. Heather. Ms. Heather and Ms. Nancy are suching a blessing in our lives! I came home feeling re-energized, especially given the week I had just had. Chloe is talking more, focusing more, and her fine motor skills are improving. She is saying some simple sentences (I think repeat myself in these blogs, sorry). For example, "I want baby show home." (I want to watch a baby show when we get home.) She is making friends. When I walked into her class for walking field trip to the pond, she was in line at the door holding hands with her friend, Marcella.
We still have a ways to go. At the field trip to the pond, I ended up having to carry her the entire way back while her peers held onto the loops and walked together. She kicked and hit at school yesterday. Last night she dumped an entire box of noodles all over my bedroom floor (don't ask). BUT...every improvement is so encouraging. If we could just improve her aggressive behaviors, everyone would benefit, most of all Chloe! Please keep praying!

Miss Heather gave us a handprint poster we did in her class the other day. It has Quinn's hands, Chloe's hands and my hands. In the middle, she pasted a poem. She said, we were the only parents to whom she gave this poem. This is Ms. Heather's first year of teaching and I am really proud of her. She stepped outside the public school bounds to give us this poem that contains words like heaven, Lord, etc. I am so glad that her and Ms. Nancy are Chloe's teachers. Oh yeah, yesterday I asked Chloe who she played with at school and she said, "Thella" (Marcella) and "Nanthy". She loves Ms. Nancy.

Here's the poem.

HEAVEN'S SPECIAL CHILD Author presently unknown

A meeting was held quite far from earth,
It’s time again for another birth.
Said the angels to the Lord above;
This special child will need much love.
Her progress may be very slow,
Accomplishments she may not show.
And she’ll require extra care,
From the folks she meets down there,
She may not run or laugh or play,
Her thoughts may seem quite far away.
In many ways she won’t adapt, and she’ll
Be known as handicapped.
So let’s be careful where she is sent, we want
Her life to be content.
Please, Lord, find the good friends who, will
Do a special job for you.
They will not realize it right away, the leading
Role they’re asked to play.
But with this child sent from above, comes
Stronger faith and richer love.
And soon they will know the privileges given,
In caring for their gift from Heaven.
Their precious charge, so meek and mild, is
Heaven’s very special child.

Happy Feet

I wonder if Chloe feels like Happy Feet some days.

Top 5 Reasons I feel Like a Failure this Week

1. I forgot to go to Quinn's school to volunteer on Wednesday
2. I forgot to go to Chloe's parent teacher conference tonight
3. Because Quinn said (as I tried to solve yet another problem re: therapy programs), "Mommy, I just wish you could play with me."
4. Because my house is an absolute mess and laundry is piled high
5. God has entrusted me with a child that I don't feel capable of parenting much of the time.

I truly feel as though I would be a great mom to two "normal" kids. Trying to keep one foot in Italy and one in Holland is too hard. Parenting two "only" children is breaking my spirit and my heart. I own every craft book ever written but never do them because I cannot get it together enough to do so. We have tons of great games but can only play them when Chloe is asleep or when we are in the waiting room of some therapy or she will destroy them. There are so many days when I wish we all would have just stayed in WI so the family support network was built in.

just wish for a couple weeks I could parent the way I always thought I would. I wish that people could see me as the together, fun-loving, up for anything person I once was. I feel as though my friends in CO have only known me as a disheveled, unorganized, sad, excuse for a mom/friend/wife.

Was talking to my dad and tearfully telling him (in code cuz the kids were in the car) that the hitting, biting, pinching, scratching (new), etc. was getting old. He asked, "Does he ever fight back?" Huh...I was talking about the fact that I was tired of getting hit, bitten, pinched, scratched. As for Quinn, he's tired of it too. No, he doesn't fight back. He yells because he knows he would get in trouble if he "fought" back. Now he gets in trouble for yelling (not from me). Dad asked what they recommend for Chloe's behavior and I told him (now sobbing), "More therapy." He replied, "For goodness sake, you are therapied out already." Yes, I know...the alternative is to live like this for the rest of our lives.

Got great advice tonight, "You just have to deal with it."

Please pray for me/us.

Just like with Jesus

A couple months ago Quinn was playing with some magnets. I was out of town and I received a call from Joe and he was excited to tell me about the interaction he had just had with Quinn. Quinn said, as he showed his dad how magnets repel one another, "Daddy, magnets are like with Jesus. When you are born there is a wall between you and Jesus, just like this." But then...he turns one of the magnets around, "Then you accept Jesus into your heart and it is like this." Click - the magnets are attached together.

Of course, we were excited by his obvious intellect :). He is making analogies. He is making analogies about magnetic fields. He is making analogies about magnetic fields and the Bible. He must be very smart.

We were far more excited about the subject of his analogy. Sometimes I really think he gets it. He loves the Lord. He understands more than we think. Just a few days ago he decided that he wanted to be a missionary when he grows up. What a lofty, prestigious goal for a 5 year old boy.

I still get goosebumps when I think of him as a toddler. It was right before or after Chloe was born, Quinn was about 18 months old. I was sitting on the floor of their bathroom singing "Jesus Loves Me" to him as he bathed. I really didn't think he was paying me any attention as he dumped water and splashed. He interrupted my beautiful singing and said, with all of the seriousness of a religious scholar, "I have two daddies." Bewildered, I said, "What?" And he repeated, "I have two daddies, daddy and Jesus." Now, I had NEVER told him that Jesus was our Father or that Father meant daddy. He hadn't heard any sermons, he didn't listen to any religious programs on the radio. The child was 18 months old. Where did this come from?

Do you ever get the feeling your kid will accomplish great things? This was one of those moments for me! It was and still is, a "wow, there's something a lot bigger than me working on this child's heart" moment. Every parent has a couple of these, I'm sure!

Two nights ago, we got home late from AWANA at church. Though I shouldn't have, I started doing laundry rather than putting Quinn to bed. Joe said to Quinn, "Let's go upstairs and read Sticky Situations (a book about making the right decisions written just for kids) and the Bible and then Mommy will come up and tuck you in." Quinn had a meltdown and sassed his daddy saying, "NO, I want mommy to read me Bible." Joe, frustrated by his sassing said, "No Bible tonight. Let's go. You are going straight to bed." Meltdown no longer describes Quinn's reaction. He lost it.

He cried, "You cannot take away Bible. You can never take away Bible." Ahhhh...Daddy did not know (my fault) that I had made a deal with Quinn a long, long time ago that Bible would never be taken away. One of Quinn's favorite things in the world is books. Occasionally, we have to punish him by saying he doesn't get any books at bed time. However, I told him that no matter how naughty he was, we would not take away Bible reading time. I felt like it was precisely those times when he most needed Bible time.

Big mistake...I forgot to tell Daddy about the deal I had made with him. Joe came to the laundry room and said something about Quinn being really upset and told me the story. I told him about our deal. He agreed with the "deal" but was now in a bind as to what to do. The books all say to tell the kids when you make a bad decision. So...we said to Quinn, "Mommy forgot to tell Daddy about the deal we made that we can't take away Bible for punishment so we came up with a new punishment." Quinn, "What is it?" Mommy, "You cannot sleep in your top bunk tonight (it was the first time he had decided to sleep up there in months - the warning tag says, "kids under age 6 should not sleep in top bunk" and this was a real problem for Quinn but his cousin Parker (age 3) got bunk beds and he is sleeping in his top bunk. Quinn finally decided it was time for him to sleep in his top bunk too). He cried, "But I was getting ready to sleep in my top bunk all day." Mommy, "I am sorry but you made a bad choice." Quinn, "I am so sad right now...zzz, zzz, zzz"

All's well that ends well!

Chloe's Friendship with Marcella

Today I received the best note in Chloe's little school notebook, it said that Chloe has been playing with a little girl named Marcella during recess. I emailed Miss Nancy (the para-professional in Chloe's class) and asked her to tell me more. Her reply was far more than I had ever expected. It has to be one of God's miracles. Please pray that God continues to help Chloe build and maintain friendships. Here's Nancy's response to this question, "Nancy, can you please tell me more about Marcella? Heather said Chloe has been playing with her on the playground."

Marcella is a wonderful little girl and she and Chloe are becoming great friends. Marcella is not disabled - she is a typical peer and so tender hearted towards Chloe. Today it was sweet. Marcella pushed Chloe on the swing and then Chloe pushed her. They like to sit together and Chloe is very content when she is with Marcella. I think they make a great pair. Chloe and Marcella spend a lot of time laughing and Chloe seems inspired by Marcella to use as much language as she can! I have watched as this relationship has grown and it has developed into far more than I dreamed. At reading time they sit together and yesterday they were laughing so hard. Both Heather and I loved to see them truly playing. I can't wait for you to see them with your own eyes! It's so fun to see Chloe with FRIENDS!

Multi-dentally delayed

Quinn is beginning to catch on...

The other day I was talking to another adult about Chloe (a topic of many of my conversations). As we spoke, Quinn eventually told the woman that Chloe was mult-dentally delayed. I guess he means "developmentally delayed". It was so sweet!

Yesterday, Chloe got off from the school bus. She came up the driveway and said, "Do?" (What are you doing?). We told her we were reading a book while we waited for her to get home. Quinn looked at me and said, "Mom, Chloe sure can do a lot for someone who is handicapped, can't she?"

He's a really good big brother. Sure, his baby sister drives him NUTS - just like any baby sister. Yesterday (now I am laughing), I came downstairs after hearing Quinn yelling "STOP, NO, QUIT, LEAVE ME ALONE!! STOP CHLOE". I was thinking, "Why doesn't he just get up and move so Chloe can't bug him while watching a show together?" As I began to descend the stairs...there was Quinn - climbing the bannister and hanging there watching the movie. I think he thought I was going to have a fit about him hanging from the railing watching their show. He said, "I had to get away from Chloe Mommy". He was probably pleasantly surpised when I said, "That was a good solution to the problem you were having."

Back to being a good big brother. Chloe loves her brother (though she shows it in very strange ways). When she comes home from school and Quinn is gone, she looks at me and says, "Qua?" (Quinn?). I tell her that he is at school. Chloe says, "Qua - coo?" (Quinn's at school?). At bedtime (mostly when Daddy is not home), as I am putting her to bed, she says, "Qua - ha ha". (I want Quinn to sing me my bed time songs). Quinn comes in and sings You are My Sunshine. He substitutes words...You will never know Chloe, how much I love you, please don't take my Chloe away." He also sings the second verse (but he has only heard it 2 or 3 times). He says, "The other night I dreamed I holded you in my arms and then I woke up and you weren't there and I held my head and cried (and he grabs his head and sings in a crying voice)." Then, he crawls into her bed and gives her a kiss and hug.

It's hard being Chloe's big brother, especially when you are only a 5 year old who is a mere 18 months older than your baby sister. I am so thankful that God gave Chloe a big brother like Quinn. He has faults but he sure is good to his baby sister a lot of the time!!

There are two schools of thought on siblings of "special needs" kids. One - the "other child" becomes angry and upset about the attention focused on the special needs child. He or she acts out in anger and hate. Two - the "other child" becomes compassionate. loving, accepting person who cares deeply and who becomes an advocate who stands up for those who cannot stand up for themselves. I sure hope Quinn chooses option 2.

I Need a Cell Phone like Yours!!!

Last night, Quinn was sitting on our bed after reading the Bible. We talked about how he hadn't talked to his grandparents in a while and how that might make them sad. This is when he announced (he's 5), "I need my own cell phone." I said to Joe, "Did you hear that????" I said to Quinn, "Did my 5 year old just tell me that he needed a cell phone?" Of course, I was laughing. Quinn, in all seriousness, continued, "I need one just like yours Mom." Okay...so my 5 year old not only needs his own cell phone...he needs a Blackberry Curve. I have my favorite five on my phone. They show up in a little circle on the front of my phone with photos. I have my mom & dad, Joe's phone, Carrie's house, My Gym and our house on there. I have unlimited minutes to these five numbers. Quinn told us he would replace My Gym with Grandma Nancy.

I think the bottom line is that Quinn wants to call his grandparents but feels he can only do so if he has in own cell phone!

I made him a phone list in an "address book" just for Quinn. This will have to do for now! Don't be surprised if you get a call from Quinn but...in the meanwhile, give him a call. Unfortunately, you will have to use our home phone number :).

To be Adored

Some friends of ours got back from Ethiopia this weekend. They adopted two small children. Lisa blogged about a little girl that they had met while there. They gave her a teddy bear. She said it was so incredibly heart-breaking to watch this little girl, teddy bear in hand, waving good-bye to them with tears streaming down her tiny face. The little girl is deaf and she has watched so many adopted children leave with their new families but she is always rejected because of her disabilities (thankfully she is being adopted by a special education teacher and her husband). She will no longer have to watch the kids go as she is left behind. Imagine the pain in her little heart.

This story really affected me. As I sit here sobbing, I wonder if I am crying for this little girl or for my own little girl who is passed over and rejected every day of her life. I know it is totally different but in some ways I feel that Chloe feels that same rejection because she is different. So many times she has been locked out of Quinn's room when he has friends over or she hears, "LEAVE ME ALONE or STOP IT" from Quinn, his friends and her cousin. She doesn't really have any friends who accept her just the way she is. She can be really hard to be around because she hits or she doesn't fit in. You cannot really blame the other 3, 4 and 5 year olds - they don't know any better.

I was reading something written by another mom of a child with PTLS - Adri is the same age as Chloe. She said that her daughter is sweet, kind & loving and she feels it is because she is modeling the behaviors of her older sister, her sister's friends and her older cousins who all adore her. Is there really anyone that "adores" Chloe? Most people tolerate her, ignore her or just pay her a small bit of attention so that they can move on to other things. It's no wonder she loves therapy so much! All that attention for just her.

The dictionary defines adore as: to regard with the utmost esteem, love, and respect; honor or to like & admire very much.

Aside from her mom, dad, aunts, uncles, grandparents...is there truly anyone who adores Chloe? She doesn't have older siblings to make a big deal of her. Her big brother is only 18 months older than her. She doesn't have older cousins that live near her...her cousin is the same age and doesn't understand why Chloe can't talk like him or play like him. Explaining it to a three year old doesn't do much good.

So, when very few people adore you, how do you act? You act silly to get attention, you do naughty things so people notice you, you hit because you can't say "hey, that's mine" or "please play with me". I understand that every child is different. Maybe Adri just has a different personality. Maybe not. Maybe if you are admired, loved, respected, included, felt to be made a part of vs. left out, yelled at, pushed away, constantly corrected you naturally develop a sweeter disposition.

Is it the chicken or the egg? Is it a catch - 22? How do we fix it? How does a mommy protect her daughter while at the same time respecting the needs of the other children in her life? Do answers to these questions actually exist somewhere? Will God explain why he chose this path for Chloe's life when I stand before Him? Will he make her all better someday? Will she feel the joy of knowing that she is one of his beloved children? What would you do? I am all ears (or eyes as the case may be).

Thanks for "listening".

The Downs

Some days are ups and others are, well...downs. Today is one of the downs. We went to a fire station field trip today. It was so fun. The firemen were awesome and we got to put on uniforms, "drive" the fire trucks, etc. Quinn and Chloe loved it.

After that we went to Dublin Park with the kids and moms that went to the fire station. It started off fine. Chloe actually sat at the picnic table and ate some of her lunch. A few minutes later, I heard one boy burst into tears. Chloe kept filling his hole with sand. Just to bug him! He was working so hard digging and she continually dumped sand into his hole. As I walked up, one mom said, "I already moved you once Chloe."

This may not sound like a big deal but imagine you trying to frost a wedding cake and someone keeps sticking their finger into it and taking licks. This was Josh's masterpiece - his wedding cake. Chloe just had to ruin it, repeatedly.

Several other little things happened along the way but the final straw was when Chloe threw shovels full of dirt at one of the littler kids that was there. He was so upset, his mom wasn't too happy (Chloe has a strong arm & good aim). She also knows better! Joe called as I was leaving because being there was more stress than it was worth. I burst into tears and another mom, coming back from her car stopped me to talk about it. You get the picture.

It's is just so frustrating at times. Quinn and I (and Joe when he isn't working) are like the professional cake decorators and Chloe is always sticking her finger into our cakes. Everything we are trying to do - from cooking to building dinosaurs is 100 times harder than it needs to be. I really feel for Quinn. Today, he was punished (had to leave the park) because of his sister's behavior. I know that this happens to others too but he seems to get a disproportionate amount of "unfair" stuff.

Last night, Joe and I were doing the yard. I ran out of gas. Joe went to get some and I went to put the rake away. Chloe was told not to go near the lawnmower. Instead of listening, she proceeded to dump cups of water on it. Later that night, Quinn and I had a meeting for his school. While we were gone, the fire department and police department were here! Chloe decided to drink some hand sanitizer, despite its foul taste. She's fine.

Please pray for us. Need more ups, especially when we are in groups!

Chloe's Always Making New Friends

Yesterday we went swimming at the club to which we belong. Within minutes, Chloe had met a little girl named Kasey. They swam, ran around, played on the grass and had a blast together. While they were swimming - Chloe met Brooke. They swam and played together until they were both so cold they had to get out of the water.

Today, we stopped by a lady's house and we got to talking. Within minutes, her little girl invited Chloe into the house to play. They ended up playing outside (since we didn't know them). It is so sweet the way she befriends complete strangers in no time at all.

On a similar note...Chloe had her first playdate at our house the other night. Since my mom was here, Chloe stayed home from our Bible Study to be with Nanny. Our friends, Rich & Keri have a little girl named Lily. Lily came over to our house and the two of them jumped, ran around, went on the swings and had snacks together. A good time was had by all!!!

Lots of Progress

Chloe has been making lots of progress over the past few weeks. It's always amazing to see! She can now jump to me from across the room. She used to only jump in place. She can do a seat drop on the trampoline!!! She can walk on her tippy toes. Yesterday she swam for a few feet without her water wings. When she thought she couldn't touch, she got scared and we put the wings on but I saw her making all of the right motions and she stayed afloat!

In terms of speech - she is really doing great. My mom watched the kids last week while I was out of town for my little business. She told Chloe to go get Joe and Quinn for dinner. Chloe went upstairs and said and signed, "Ca, ea". That's come, eat! It wasn't perfect but they knew exactly what she told them to do and that's what really matters. She now says, "Nancy" and yesterday she met a new friend named "Kasey". I said, "This is Kasey" and asked Chloe if she could say Kasey and she immediately said, "Kah....see". WOW!!!

Wuh Woo

Do you remember what it sound like when your kids first said they loved you? For Quinn, it was at a pretty young age and it sounded like this, "I ud you Mommy". It sounded so sweet. Sometimes I still tell Quinn that I ud him.

For the longest time when we told Chloe that we loved her, she would respond with "Wuh". That means "Love". So, we figured she loved us too :). Most recently, she began responding with "kay". I guess it is okay with her that we love her.

Today, we practiced saying, "I love you Daddy" while she was swinging. I wanted to see if I could get her to say, "I love you Daddy" before he comes home from his "guys' weekend" of camping with Quinn and some friends/neighbors from our Bible Study group. She finally said, "Wuh Woo Dada". It wasn't altogether but it was still more than "wuh".

Maybe with a little practice - she will say, "Wah Woo Dada" to her Daddy when he gets home on Sunday night!

Used To I Didn't Like Her

During a rare moment a couple weeks ago, the kids were outside together. They were playing near each other in the pebbles under the swing set. They weren't interacting - this can be good sometimes. Nonetheless, they were next to each other playing. About the time I called them in for lunch, it started to thunder. Chloe kept playing in the rocks despite my telling her to come in for lunch. As the thunder continued, Quinn got more and more agitated by the fact that Chloe wouldn't come in. He pleaded with her, "Coco, there might be lightening coming soon." ; "Come inside now - it is thundering!" ; "Chloe, if you don't come inside you could get hurt in the storm." I wanted to see how long this would go on (does he actually care if she gets hurt?).

After a couple minutes I heard Chloe crying hysterically and saw her running to the house. Quinn came into the kitchen just before Chloe and said, "Mom, if you really want Chloe to come, you have to take her dog (a stuffed animal she was in love with for a brief period) and she will follow you. It worked.

We sat down to lunch and Quinn announced (with Chloe right across from him) - "Mommy, used to I didn't like Chloe too much but now I am getting used to her."

That's progress, right?

I got a promotion!

I just wanted to let everyone know that I received a promotion yesterday! Yep - after all of this time as a house cleaner, diaper changer, short order chef, clothing shopper, etc., Quinn gave me a promotion. He yelled for me to come & wipe his butt and pronounced me the "Queen of Wiping My Butt".
Sad but true.

She said MOMMY!!!!

Keep praying - it is working!!! Last week at my parents house, Chloe starting saying "Baboo, Baboo, Baboo". Sounded like baboon without the N. Anyway, after she did that for a couple days, I said, "Coco, say "dadoo" and she did!!! So we did "dadoo", "baboo", "mamoo", etc. We did that for a day or so and I tried "Daddy"! She said it PERFECTLY. So, we would hear her in the backseat softly saying "Daddy, daddy, daddy, daddy..." She even said it to Joe over the phone. I finally went for the motherload (no pun intended). I said, "Say Mommy" and...she did! Now, Mommy & Daddy may not sound too exciting to most of you but if you waited 3 years and 3 months (exactly) to hear Mommy - you might post a blog too :).

Just so you know, this is a natural progression. From mama, dada, papa, etc. to baboo, gaga googoo, etc. to mommy, daddy, nanny (she also said nanny). I am prayerful that we keep up this great progress.

Today she said, "Amy". This is her teacher at school. How exciting.

Please keep the prayers coming and spread the word to your friends & family that are believers. Thanks to those of you praying for Chloe's speech. Feel free to throw in Quinn's name too - we still have plenty of work to do with him as well.

Just Kidding

Just a quick post to let people know that I was joking about the Blarney Stone! We have had two people (that we know of) that have taken me seriously. I was being sarcastic (hard to believe, huh?) as I know the Blarney Stone won't do anything compared to what we can do with prayer! Please pray for Chloe's speech!

Two Choices - Money or Prayer for Chloe's Speech

As many of you know, Chloe still has severe speech delays. We are doing private speech therapy 2x per week and she also receives speech at school. She is making painfully slow progress. We have seen the power of prayer through the years with many family members and most recently, we have prayed for Chloe's aggressive behaviors (especially hitting) to diminish. We tried to pray for this daily and her behaviors have improved a lot. She doesn't hit Quinn nearly as much as she used to. She still gets frustrated when she cannot communicate and this causes her aggressive behaviors to resurface at times. I guess what I am trying to say is that the prayers about her behavior seem to be working.

That said, we thought we would ask you for one of two things. Since the kissing the Blarney Stone is said to give the gift of eloquence - we thought we could ask you for a large donation of money to go to Ireland. Obviously, we would need tickets and lodging for four. Quinn still requires speech therapy 2x per week and we are hiring a private therapist for the summer. It would be important that he also kiss the Blarney Stone. Traveling overseas with both kids would be far too stressful for just one parent so both Joe and I would need to go. As you can see, this would be quite expensive. So sending a large check with Blarney Stone in the memo would be a very thoughtful thing for you to do. Or if you would rather...

We would ask that you would pray for Chloe and Quinn regarding their speech. Quinn is making great progress and I am confident he will continue to do so. In reading what other moms have to say about their kids with PTLS, I am feeling discouraged. Many of the kids don't speak well even at much later ages. A couple moms posted and their kids are 4.5 and 6.5 and they sound a lot like Chloe. Their kids have been through all of the same therapies & treatments. Their parents have worked with them. We know we have to continue to do that but we feel like a band of prayer warriors will do Chloe more good than all of the therapy in the world. Please pray.

If I had to choose between the Blarney Stone & prayer - I choose prayer. I hope you will too.

Love,

Amy

Shay Reminds Me of Chloe

Alex Hoag Kid's Run (Quinn, Coco, Parker)

Check it out - No training wheels

Daddy & Coco at the Alex Hoag Run

One of Chloe's former therapists sent this to me today. I have read it before but the older Chloe gets the more I cry when I read it. No one wants to be included more than my little social butterfly. I thank God for my friends who try their best to include Chloe. A while back, my friend Laurel invited us to decorate cookies for some holiday. Would this have been easier to do with out Chloe? Heck yeah! Did she invite us anyway? Yep. Chloe ate more than her share of dough, dumped sprinkles, broke cookies and when we were done, Laurel's floor was a cross between a sandbox & a playdough pit. Has she asked us to do other things since? She sure has. She recently told me that she thought her boys would be better people because of knowing Chloe. Talk about being a proud mommy. How did God know just what I needed from a friend when he brought Laurel into my life? Another friend, Dena, has been keeping Chloe for me on Tuesday afternoons so that I can take Quinn to speech. Dena's daughter, Leila ("WeeWah") is Chloe's best little friend (she is almost 18 months old). Dena fed Chloe and her boys even asked Chloe to teach them some sign. I don't know what I would do without Dena. She's a good listener, a great friend and a wonderful example of a devoted mother.

Anyway...back to Shay.

Two Choices

What would you do...you make the choice. Don't look for a punch line, there isn't one. Read it anyway. My question is: Would you have made the same choice? At a fundraising dinner for a school that serves children with learning disabilities, the father of one of the students delivered a speech that would never be forgotten by all who attended. After extolling the school and its dedicated staff, he offered a question: ' When not interfered with by outside influences, everything nature does, is done with perfection. Yet my son, Shay, cannot learn things as other children do. He cannot understand things as other children do. Where it the natural order of things in my son? The audience was stilled by the query. The father continued. 'I believe that when a child like Shay, who was mentally and physically disabled comes into the world, an opportunity to realize true human nature presents itself, and it comes in the way other people treat that child.' Then he told the following story:

Shay and I had walked past a park where some boys Shay knew were playing baseball. Shay asked, 'Do you think they'll let me play?' I knew that most of the boys would not want someone like Shay on their team, but as a father I also understood that if my son were allowed to play, it would give him a much-needed sense of belonging and some confidence to be accepted by others in spite of his handicaps. I approached one of the boys on the field and asked (not expecting much) if Shay could play. The boy looked around for guidance and said, 'We're losing by six runs and the game is in the eighth inning. I guess he can be on our team and we'll try to put him in to bat in the ninth inning.' Shay struggled o ver to the team's bench and, with a broad smile, put on a team shirt. I watched with a small tear in my eye and warmth in my heart. The boys saw my joy at my son being accepted. In the bottom of the eighth inning, Shay's team scored a few runs but was still behind by three. In the top of the ninth inning, Shay put on a glove and played in the right field. Even though no hits came his way, he was obviously ecstatic just to be in the game and on the field, grinning from ear to ear as I waved to him from the stands. In the bottom of the ninth inning, Shay's team scored again. Now, with two outs and the bases loaded, the potential winning run was on base and Shay was scheduled to be next at bat. At this juncture, do they let Shay bat and give away their chance to win the game? Surprisingly, Shay was given the bat. Everyone knew that a hit was all but impossible because Shay didn't even know how to hold the bat properly, much less connect with the ball. However, as Shay stepped up to the Plate, the pitcher, recognizing that the other team was putting winning aside for this moment in Shay's life, moved in a few steps to lob the ball in softly so Shay could at least make contact. The first pitch came and Shay swung clumsily and missed. The pitcher again took a few steps forward to toss the ball softly towards Shay. As the pitch came in, Shay swung at the ball and hit a slow ground ball right back to the pitcher.

The game would now be over. The pitcher picked up the soft grounder and could have easily thrown the ball to the first baseman. Shay would have been out and that would have been the end of the game.

Instead, the pitcher threw the ball right over the first baseman's head, out of reach of all team mates. Everyone from the stands and both teams started yelling, 'Shay, run to first! Run to first!' Never in his life had Shay ever run that far, but he made it to first base. He scampered down the baseline, wide-eyed and startled. Everyone yelled, 'Run to second, run to second!' Catching his breath, Shay awkwardly ran towards second, gleaming and struggling to make it to the base. By the time Shay rounded towards second base, the right fielder had the ball. The smallest guy on their team who now had his first chance to be the hero for his team. He could have thrown the ball to the second-baseman for the tag, but he understood the pitcher's intentions so he, too, intentionally threw the ball high and far over the third-baseman's head. Shay ran toward third base deliriously as the runners ahead of him circled the bases toward home. All were screaming, 'Shay, Shay, Shay, all the Way Shay' Shay reached third base because the opposing shortstop ran to help him by turning him in the direction of third base, and shouted, 'Run to third! Shay, run to third!' As Shay rounded third, the boys from both teams, and the spectators, were on their feet screaming, 'Shay, run home! Run home!' Shay ran to home, stepped on the plate, and was cheered as the hero who hit the grand slam and won the game for his team. 'That day', said the father softly with tears now rolling down his face, 'the boys from both teams helped bring a piece of true love and humanity into this world'. Shay didn't make it to another summer. He died that winter, having never forgotten being the hero and making me so happy, and coming home and seeing his Mother tearfully embrace her little hero of the day!

Sweet Home Alabama errrr Colorado

We were actually considering a move to Alabama. I know - I cannot believe it either. That said, do you realize I built a snowman in October and could have built another one in May? That means that there are four months of the year in which I couldn't build a snowman. That would be great if snowman building were my passion, however, it's not. I like swimming & water skiing and camping. Joe & Quinn bought these seed starter kits. You plant the seeds in the house and then when they get to a certain height, you plant them outside in the ground. Like any normal person, we began this a few weeks ago. Now the plants (especially the beans) are about 2 feet tall. They have one stalk each and they are flopping over. The dirt in the little containers is getting moldy and I am guessing if we don't plant them outside very soon, they will die before we get them in the ground outside. I guess we could put them outside and then let them die of natural causes (freezing) rather than killing them slowly while waiting for spring.

My friend, Laurel and I were having a garage sale this weekend. I was hanging up the signs in 27 degree weather! Yes - 27 degrees. I sat in my garage freezing my buns off with a winter coat on while the die hard garage salers trickled in. That very same day, my mom told me it was 80 degrees in Alabama.

We had begun to look at houses on the Internet. Though prices aren't what they once were in AL, you can still get a pretty nice house for a reasonable amount of money. Some of them have pools in the yard. My dad often reminds me that I said I wasn't going to have kids, I was going to have a swimming pool (he always followed it up by saying "that's going to be hard to pass - as in delivery"). Anyway, we could then venture out into lake properties. AL actually has many beautiful lakes (CO has reservoirs filled with snow-melt). AL always struck me as sort of a "nothing" state. I mean, who says, "Hey let's plan a family trip to Alabama"? I cannot think of anyone. On the other hand, we had tons of visitors when we were in CA & CO is a nice tourist (guest) state too. CT probably was but we weren't there long enough to find out plus I was busy with a new job, having a baby & dealing with post-partum depression. No one would really have wanted to visit (at least not if they were smart). Anyway, back to AL. It's actually got some very pretty areas & some nice qualities. The most important being my parents & my Aunt & Uncle & cousins. I think that my mom would be such a big help. I may be delusional because some of my friends have parents that help all of the time. They take the kids to plays & out to lunch, etc. They pick them up from school and help out when they are sick. The mom & dad actually go on dates!! Then...I have other friends who complain because their parents live close by but don't seem to care too much about seeing the kids & are so busy that they don't help out as much as the kids would like/need.

Well, none of this really matters because last week I called the organization that provides services for disabled children in other states. The woman has three disabled children of her own. She was adamant about our family staying in Colorado. She said she would trade us places in a heart beat. She is under the impression that CO & FL have the best services around. She said AL services are terrible. you have to fight for everything, Chloe would likely go uninsured unless we had group health as Medicaid doesn't help too many kids there, the schools are horrible, etc. She went on and on and on. If she didn't have three kids of her own - I might have disregarded what she said but she seemed to know the innerworkings of the system. I am going to have to talk to at least a couple more people but my first impression is that we will be building snowmen 8 months out of the year. The schools have always worried me but now I cannot imagine going from CO to AL & losing services for Coco. Things have gone so smoothly for us in terms of getting the therapies we need. That said, how do you weigh services vs. family? I am sure my friends with disabled children probably weigh them differently than the average family might. It's a whole new world when you have to consider "Can my daughter get medicaid if I move?" or "What if she cannot get enough schooling or the therapies she needs?"

On a side note (I probably mentioned this in an earlier blog), it is still a little hard for me to accept that Chloe has Medicaid. I always thought Medicaid was for the poor, people who couldn't afford to get insurance or didn't work. Geez, we work our butts off & our child is on Medicaid. I think mentioned that we cannot get insurance for Chloe because we are self-employed. Before they knew what was wrong with Chloe (especially before they knew), no company would insure Chloe. Given our rates without her, we wouldn't be able to afford insurance even in they said they would insure her. Thank God she qualified for Medicaid. I don't mind paying my taxes nearly as much as I used to!

Better to laugh than to cry!!

It has taken me a few days to find the humor in last week Wednesday. I think my life might be out of control - what do you think?
Joe took Chloe to school. Quinn and I were supposed to take Mitzie to the groomer. My friend, Laurel was relying on me to watch her two boys for the day. Sometimes things don't go the way we plan...
I was about to leave for the groomer when the phone rang. It was the credit card company with whom we have a 0% interest rate to pay for the vending machine business we bought (part of our "get rich slow & painfully scheme"). We owe about $10,000 and we have to pay $159 per month. At any rate, somehow I shorted them $31 on my last payment. My payments would now go from $159 to $440 due to the jump in interest rate to 29%!!! The lady on the phone was so kind as to waive the $39 finance charge. She also told me to call the next day after my $31 payment posted to see if maybe they would bring my payments back down since this was my first incident.
We raced out of the door to the groomer where we arrived 20 minutes late. The groomer said, "Mitzie is very late and you will have to reschedule." With Mitz in tow, we headed in to buy her some dog food only to find they didn't have her kind in the size we needed. As we were about to leave Petco, my phone rang. It was Chloe's teacher. Chloe didn't seem to be feeling well and I needed to come & get her.
I called Laurel & she found someone else to watch her little guy (Alex) and we would meet at McDonald's so I could pick up Joey since Laurel was now going to be late for work because of me.
I started toward the preschool, missed my exit and took the long way. We finally arrived and Chloe was on her way to recess. She was SO SAD that she had to come with Quinn and I vs. going "si" (outside) with her friends.
The afternoon went pretty well except that Chloe wouldn't take a nap - a time that I rely heavily upon for my own sanity. I used to feel guilty about this but I decided that I was a better mom when I had those 1.5 hours to myself.
That evening, I picked up the phone to call my mom only to find that our long distance had been cut off due to lack of payment! OMG (that Oh My Gosh in blog language). I added a fax line a few months ago but I failed to change my automatic bill pay. Since I have automatic bill pay, I don't open the phone bills, I just shred them (doesn't this sound like an attempt to simplify my life?). Well, each month I owed the company about $40 more than I was paying. I had received a notice about this the Saturday before we left for TX. The phone company isn't open on weekends so I assured myself I would call from TX on Monday morning. Does that sound as funny to you as it does to me at this point?
My formal dining room table is covered in Hotwheels Tracks. My formal living room is a playroom & Chloe is now in the "let's pull all of the books off the shelves" phase of her life. Why do these have to be the first two rooms when you walk into the front door of my house? We have an awesome, really big playroom in the basement. I don't think the kids would even miss it if we walled it off...it is much more fun to be in the thick of things upstairs.
One final note. I was so excited to have bought a book about getting organized. It was written by the guy from HGTV who goes into homes & organizes them (we don't get HGTV but this info. was on the cover of the book). I read the first two chapters and I was feeling very empowered & enthusiastic about getting organized. I lost the book.

The Real Cunningham Family

Photos: Quinn not getting his way; Quinn's pretend angry face; the Queen of Bed Head (no enhancements necessary); Amy posing for another photo by Quinn

I have gotten a lot of comments about how cute Coco looked in all of the photos. Believe me, you didn't get the first photo I took each day :). I thought I would clue you in on what we really look like on any given day.

School - 4 days per Week

Another good news - bad news day. Chloe was so excited to go to school today. She hadn't been there in two weeks! She kept saying "coo", "coo" all morning. She uses her sign with the "coo" so we know she means school. When Joe dropped her off, they told him that she would be starting 4 days per week next week!!! It was so much easier than I thought. Chloe will love it and hopefully she will continue to make progress.

Bad news...they called me to come and get her about 30 minutes after she arrived. Apparently she was pulling on her ear & very fussy. Off to the doctor this afternoon.

Quinn has a friend over and they were all downstairs. I asked if they were being nice to Chloe & they replied, "yeah, really nice. We aren't even shooting her or anything." I guess, in 4.5 yo talk, that is a very good thing.

I have included a picture of Chloe at the airport. I wanted you to see how flexible she is. Check out how she has her legs intertwined.

It Takes a Village!!!

Sometimes I surprise myself - using a quote from a Clinton. Let's just pretend someone else said it because it is actually true!

While we were in Texas my friends helped so much. Two of the days I was gone, my friend Amy had Quinn. Quinn & Peyton had a great time. My friend Laurel kept Quinn until 7:30pm one evening. Joey & Quinn weren't ready to part when Joe came around 5:00pm. That said, we were once again finishing up our taxes and Joe took this as an opportunity to find the post office that would postmark them for April 15 :).

Despite the fact that I am back, the village continues t0 help me raise my children! Chloe had therapy at 9:00 and 10:30am yesterday. Quinn had school & karate until 12:15pm. He had to be at speech by 1:00pm. So...I had to take Chloe to Dena's house to eat lunch & take her nap. As a result, I was running late to get Quinn from school so I called Laurel & she stayed at school with Quinn until I got there. I rushed back to Dena's to get Chloe because I had to get to sign language by 3:30pm (so I thought). I got to my friend Patsy's house (sign language is held there) and no one but Patsy & her kids were there. I asked where everyone was and she reminded me that sign language doesn't start til 4:30pm. I am quite sure I have lost my mind. It was nice talking to Patsy for a few minutes though.

What a day!

Welcome Home!!!

When we arrived in Colorado Springs, I had to wake Chloe. She was just exhausted. As we rounded the corner heading toward baggage claim - there were my boys! They were in matching t-shirts made by Quinn. The front said "Welcome Home" and the back was a colorful piece of art. Quinn quickly gave me a book I had wanted & Chloe a baby (imagine that). We were so excited to be back together.

We went to dinner at a really neat place - it is a restaurant that was built around an airforce plane. We got to eat in the plane & play in the cockpit. Then we headed over to Kiki & Bubba's (Aunt Carrie & Uncle Cory's house). We had to pick up Parker for our sleep over.



We stopped at the park on the way home. Jumped on the trampoline when we got home. Then...Coco was ready for bed!!!

I feel best when I am armed with a to do list and boy am I armed after this trip! I have to get Chloe into 4 days per week school, increase therapies, switch speech therapists, get some support for mommy & daddy (per doctor's orders). Can't wait to get started.

It's great to be back!

Last Day

Photos:
Chloe getting an echo cardiogram
Sharing Sasha with strangers
Chloe & Dr. Potocki
Chloe & Dianne
Ready to go home
On the airplane
"It's over..."

Our final day in Texas was just as busy as the rest. The best news of the day was that we received all good news & not a bit of bad news.

Chloe had her blood drawn first thing in the morning. It only took 4 of us to do that. For someone with low muscle tone, she is a strong little girl. All of her blood work came back normal :). Interesting tid bit - Joe, his mom, my mom, my dad & I all have high cholesterol. In the area that is duplicated on chromosome 17, in addition to the genes that give her PTLS & CMT, she also received 3 copies of the gene that controls cholesterol. Her cholesterol looked great!

After the blood work she had to have an echo cardiogram. This is an ultrasound of the heart - every chamber & every vessel. Over 50% of the kids with PTLS have heart defects, some of them very severe. They thought they might have to sedate Chloe - this would have met extending our stay. But...much to everyone's surprise, she laid there like a very good girl. We did have to get a little creative. Baby Einstein was playing on the TV above her - that was okay for about 3 of the 20 or so minutes. Once she realized that the ultrasound gel was gooey & fun to smoosh through her fingers - she didn't care at all about Baby Einstein. She wanted ultrasound gel & we couldn't get it to her fast enough. She loved it and I bet no one at Texas Children's Hospital has ever used more gel for one ultrasound. Oh yeah - her heart is perfect!!! What a blessing to know this is the case. I have included a picture from the echo waiting room - Chloe sharing Sasha with a couple total strangers.

After the testing, I finished packing up while Chloe roamed the halls & repeatedly had the nurses hold Sasha, look at Sasha, etc. Dr. Potocki came up & reviewed all available test results. More good news - I may have told you some of it but good news is worth repeating. Her kidneys looked great, her hearing was perfect, & she doesn't fit anywhere on the autism spectrum! The report was very clear & it was done by the chief of the department. She said that the only criteria Chloe met was age of onset. Since she was being evaluated at the age most kids start having signs of autism, she fit that criteria. What a relief!

All in all, this was a good week - emotional but good. Joe and I are holding out hope through prayer & perseverance. We feel confident that Chloe will be the 2nd child that is not considered mentally retarded (developmentally disabled is the term used among therapists) at age 7 (when they can test her IQ). All of the things that typically cause problems for kids with PTLS (heart, kidneys, spine, etc.) checked out just right - who is to say that her brain won't do the same. That said, it will take close to a miracle (hint, hint - please pray for Chloe forever).

I enjoyed getting to know my little girl a lot better. It must be hard to be a second child - she has spent very little time alone with us because she has had a brother her whole life. We really enjoyed being with each other and she was such a great roomie :). I look forward to our next trip together.

After our good-byes we took a cab to the airport where we had a 2 hour wait. Chloe was wonderful and she was great on the plane too. She stayed in her seat the entire time & no one would have known she was on the flight. She eventually passed out & so did mommy!!!

Thank you for your emails & prayers. I felt inspired every morning when I read your messages.

Day Four

Photos: Chloe's getting used to the head wrap!
Chloe & Sasha
Coming Undone
All cleaned up!
Chloe & one of the many cows at TCH

What a day this was! Chloe was awakened by a voice over a loud speaker at 6:30am. "Chloe, open your eyes. It is time to wake up. Chloe, you have to wake up now." Remember, she got to bed around 10pm and probably didn't sleep well.

After getting up & dressed, etc., we went for a walk around the hospital to get mommy a few diet pepsis. When we got back, breakfast wasn't there yet and it was time for Chloe's first nap. So, she laid down and we were just about asleep when they turned all of the bright lights back on. After that nap, we watched a show, played in the water at the sink, etc. Soon, it was time for another nap. I talked with Dianne about other kids with PTLS and it was very insightful. So far, Chloe has none of the other health problems that these kids have (other than losing a lot weight after birth & having some difficulty with swallowing & far-sightedness). She has normal kidneys, no curvature of the spine, no heart defects, no siezures, etc. - none of the big stuff anyway.

After that nap, Dr. Potocki showed up to talk with me. We all hung out til Chloe's next nap. At that point, Dr. Potocki & I went out to the hall where she began to show me her slide presentation on PTLS. We got to slide 6 (of 64 or so) and it was a photo of a teen-age girl and one of the bullets said, "Mentally Retarded". I asked why it said that and Dr. Potocki told me of all of the PTLS kids seen to date, only one was not considered "mentally retarded". WOW. In my mind, there is a big difference between developmentally delayed & mentally retarded. I was in shock - complete shock. She proceeded to tell me that you cannot officially label someone as mentally retarded until they are old enough to take a certain IQ test or something (she sort of lost me for a few minutes). I asked her if Chloe would know that she was "different" or "retarded" and that is when I completely lost it. I don't remember crying so hard in my entire life. I actually broke blood vessels under my eyes. I had never considered the fact that Chloe might really be retarded. I had mentioned mild mental retardation to Joe & Carrie (my sister) but it was more of a "in some ways, Chloe might be described as mildly retarded if you didn't know her or if you didn't know what she had". Retarded - what a harsh word. The girl who might get picked on, the child who rides the short bus & attends special classes. This is the girl who doesn't get to get her driver's license or get asked to the prom - the one whose daddy probably won't get to walk her down the aisle. This is a big thing! It was real for the very first time because someone who knew more kids with PTLS than anyone else in the world had said it. Dr. Potocki of Potocki-Lupski syndrome said that these kids are mentally retarded. I couldn't pull myself together.

At that moment, Dr. Powell walked around the corner to come see how I was doing. Thank God for small miracles. They put her and I in a sleep study room and we talked for over 2 hours. We talked about resources and support groups and planning for Chloe's future. Chances are she will live longer than us and who takes care of adult mentally retarded children? Where do they live? Who supports them? How do we ensure that she has the best care possible and that people are always kind to her when we are gone? You don't ask your sister or your friend or your brother to do that. What do you do? How do I come home & start this process? I must admit that I am scared to death. I have never been more scared than I am of the fact that this is all a reality. A shocking, painful, rip out your heart, saddest, scariest reality. Maybe for some of you it might not be, maybe you think it might not be, maybe it is just the newness of it. Perhaps some of you are losing any respect you may have had for me. If so, that's okay. We all cope differently and if that is the case, I don't think you would be the support I need right now.

I am so thankful to have had Dr. Powell tell me that we have to grieve and be sad & mad and all of those things because what we think of when we have children is a real thing - a real dream. It's the hopes you have for your family & for your child's happiness and ...all of the changes. It doesn't mean it is better or worse but it does mean that it is different. A loss of one thing but gaining something else - we have to grieve the loss before we can accept the gain.

Dr. Powell also said that maybe we should begin talking to Quinn about Chloe's special needs. Quinn was talking the other day about the special needs camp we all went to. I asked him if he knew what special needs meant and as I suspected, he said "no". I told him that Chloe was special - that we had to take her to therapists to help her talk and to get her muscles to work right, etc. Most kids don't have to do those things. He added a few comments about therapies & what Chloe was learning. I also told him that it meant that he was extra special because not very many big brothers get to have baby sisters with special needs. He liked that. I am okay with leaving it there for a little while. We'll see what Joe (my personal clinical psychologist & husband) has to say about it though.

I asked Dr. Powell if Chloe would know she was "mentally retarded" and how we would deal with that. She said, "She might know she is different and she might ask you about it some day." She said to tell her, "You are different and that is what I love the most about you. You are special and you will always be my baby girl. I am so lucky."

She is different. Is different better or worse? I will let you decide after you read the next couple things.

On our last visit to Denver Children's Hospital, there was a guy in a wheel chair who was clearly mentally challenged (retarded or crazy). He was dirty and smelled of urine. Chloe walked right up to him and put her hands on his lap and said, "Hi'. Can you imagine how long it might have been since someone did that to that man?

As people come into our room or the elevator, Chloe says "hi" to all of them (& she keeps saying it until they acknowledge her or leave). She cannot say much but she tells everyone she sees "hi." I overheard one nurse telling Chloe, "I just love your little personality."

When I was talking with Dr. Powell today, Dr. Potocki & Dianne took Chloe to video tape her gait. Tonight, when I was talking with Dr. Potocki she told me that as they walked through the hall, Chloe said hi to everyone. She said it didn't matter if they were black, white, hispanic, or indian. It didn't matter if they were old or young, walking or in a wheelchair. It didn't matter if their heads were wrapped in bandages or they had tubes coming out all over them. She just said, "hi". By this time, Dr. Potocki was crying too. Don't you wish that more people were like Chloe sometimes?

What do you think? Better or worse? Maybe just different...right?

Thanks for "listening".
Love,

Amy

p.s. At some point, I will tell you more about what Dr. Powell recommended for Chloe's current intervention plan. School, therapy, early vs. later treatment, etc. Right now I am physically & emotionally exhausted. I cannot wait to get home to see Joe & Quinn!! It's better when we are all together :)

Day Three (a day late)

Playground



Photos:
Chloe & Sasha getting their vitals
Chloe & her favorite CNA (Mariam)
EKG
Playground at TCH
Chloe, Sasha & Dr. Potocki
Ready for bed!

Today started of fun and ended not so fun. This morning, Chloe had a play date with a psychiatrist. May not sound like fun to you but she had bubbles, babies, play-dough, etc. Coco had a great time and the psychiatrist thought Chloe was wonderful.

She had an EKG mid-morning (see photo). She did well with that. Very good girl.

After that she finally took a much needed nap. I talked with a genetic counselor & Dr. Potocki during this time. I found out that our geneticist should have known Chloe's diagnosis of PTLS for more than a year before we got it. We knew she had a duplication on chromosome 17 cince June 06 and we knew it caused CMT. He told us that this didn't have anything to do with her delays. Dr. Potocki went through all of her medical records and her first genetic test showed dup p11.2 (PTLS). Had we known that a couple things would have changed...we would have started the grieving process a year sooner, we would have been down here a year sooner and I would have learned how good school & therapies are for Chloe (more important than we even thought). This was hard news to handle.

After Chloe's nap, we had an appt. with a child psychologist who works with only families with at least one developmentally delayed child. Chloe was asked to do some activities and the Chloe that challenges me daily came out for them. They were the first to see her challenging behaviors (other than during medical testing which I think is normal for all kids her age). She was defiant, sassy, and uncooperative. This made me feel sad after such a wonder first 2.5 days. The doctor wanted to talk to me alone for a while. This was the hardest part of the trip so far. I don't know how much I should write about this because I don't want you to look at Chloe, our family or me any differently. Keep in mind that Chloe is the same child today as she was before we came to Texas. Now, we have more information and the information was very difficult for me to handle emotionally. In fact, I later learned that Dr. Powell (the psychologist) called Dr. Potocki & Dianne immediately my appointment with her. She said, "This woman is headed for a break-down and I am quite sure it will happen this week." (Keep in mind this was yesterday and I am a day late in writing this blog). In many ways this blog is very cathartic for me and if I share too much, I am sorry.

Our conversation started about Chloe's behaviors and how they impact our family. She asked a lot of questions about Quinn and our marriage, etc. I told her that Quinn cannot build, create, draw or do anything without Chloe destroying it. I also told her that Chloe hits Quinn repeatedly throughout the day. At 4.5, he should be able to build towers & super heroes and other things without always having them destroyed before he gets to show someone. He shouldn't have to be hit regularly by his little sister. I know that this sounds like sibling rivalry to most parents, however, it is very one-sided in our home. Quinn puts up with a lot. He has been asking for a lock on his door for a long time because sometimes he just needs to "get away". The psychologist actually said that we should get him one - something we were adamantly opposed to. I also described how Chloe gets locked out of the room when other kids come over because she cannot control her behavior around other children. She doesn't know how to play. They don't want her around and she wants nothing more than to be included. Bottom line - I was feeling so bad for both of my children by the time this session ended that I had begun to break down. It sort of concluded with her telling me that we aren't like other families because we have a special needs child and our lives would always be different. Even though I knew (in my brain) that Chloe would never "catch up", I had some hope in my heart. Having someone say that your life is different and it always would be was hard to hear - at least for me. It is hard to describe some of these feelings but I am prayerful that you will have even the slightest understanding. Because no one we have ever seen (doctor-wise) knows anything about PTLS, hearing this from someone who has seen multiple PTLS patients was just hard.

Well, I recovered after my sweet daughter came into the room and kissed my arm when she saw me crying. I got a grip and headed back to our room to pack for the sleep study. Chloe and I then went to the playground (see photos). We had fun doing that and it was a beautiful day.

A little after 7pm, we headed up to the 21st floor. It is the top floor of the hospital but I always thought the penthouse suite would have large windows with beautiful city views. However, it was a dark, quiet room with no natural light. It was then that I learned that not only did she have to sleep with all of the sleep study stuff (which took about 1.5 hours to put on), she would have to take 4 forced naps throughout the day! We pretty much had to stay in that room all day and she had to take 4 twenty minute naps spaced about 2 hours apart.

Chloe was a trooper - she hated every minute of the cannula & the tape & the hat, etc. but she survived. Dr. Potocki (an amazing woman) stayed almost the whole time they worked on getting Chloe ready (see photos).

We finally got to bed close to 10pm, I think. Oh yeah, they wanted me to sleep with Chloe so I could be sure she kept her stuff on. They use the term sleep VERY loosely. After a while, I gave up and moved to the couch. She was on top of me, kicking me, wrapping cords around me, etc. Neither one of us would have slept at all.

Night One & Day Two

Photos - Chloe in the rocker in our room, Chloe trying convince to let her sleep with me tonight, Chloe in her crib (cell).

First night without melatonin - Chloe did okay falling asleep. Staying asleep was a different story. About 1am, she woke up and wanted water & to come into my bed. I told her no as I didn't want to start something but she wouldn't let up. So...in an attempt to get some sleep she joined me in my single futon bed. After about 1.5 hours or so, we were both back to sleep and the nurse came in to check her vitals! Urgh! She went right back to sleep and my cell phone alarm went off at 6:30am (forgot to turn it off from Monday). We fell back to sleep and finally woke up around 7:15am.

Today was another very busy day. We went to a speech and language assessment where Chloe scored about 2 years & 8 months on comprehension. That was the good news! The woman was very impressed with Chloe's ability to understand things and thought she may have scored higher than the little girl who was here 3 weeks ago - she was four years old. The bad news was that she scored lower than a two year old for expressive communication. She could name most things but didn't know hers vs. his, colors, shapes, etc. She also doesn't complete very many words and this brought her score down as well.

We went straight from there to finish the hearing test she started yesterday and she officially passed in both ears! Dr. Potocki and a genetic counselor walked us back to our room from there and we talked until my next appointment with a psychiatrist. This was the most painful part of my day. Two hours of questions on my child's behavior - does she point or take you by the hand to show you something? When she points, does she look at you and then the object and then back at you again? Things you don't think about until someone asks you a million questions about it.

While I was at that appt., Chloe had an appointment with radiology. They looked at her kidneys, liver, etc. They also did an x-ray of her spine. From what they could tell, everything looked great (more good news). Unfortunately, we have to have a "do over" on the spine x-ray because she wouldn't cooperate while getting the side view. When Dianne & Chloe met me after our simultaneous appts., she told me that she just didn't want to make Chloe scream by holding her down. She said this as she led me to the ENT who put drops in Chloe's nose & proceeded to stick a long tube down her nose into her throat to look at her vocal chords. All of this while Chloe screamed because I was holding her down. More good news - Chloe's vocal chords look great! So do her ears and the back of her throat.

Chloe was pretty fed up by the end of our appts. (4:30pm or so). We got back to our room and the nurse wanted to take her BP & temp. She gave up!

Chloe & I finally did some girl stuff on our girls' trip. We went out to dinner & shopping. Coco got several new outfits & I got hairspray :). We went out for Thai food. Chloe ate ice for dinner despite having a huge bowl of fried rice in front of her. She did, however, have fortune cookies for dessert. After dinner we bought Quinn a little surprise & headed back to the hospital (about a 25 minute walk to shopping, etc.).

Tomorrow we have a lot more appointments and then we head up to the 25th floor where they will study here sleep in an environment in which it is all but impossible to sleep. She will have the wires attached to her head & they will put a cap over that. Then, they will put a cannula in her nose to test her sleep on different levels of O2. She might surprise me and sleep because she is one exhausted little girl. Three days with no naps!

She is bringing joy to tons of people down here. The nurses love her & Sasha! Sasha has had her blood pressure & temp taken 3 or 4 times. Chloe greets everyone that gets on the elevators or sets foot into our room. I couldn't find her at one point and I walked out to find her sitting on the lap of one of the nurses at the nurses' station.

Houston is so pretty. Green trees with leaves (not needles) and green grass (not brown) and warm, sunny (not cold, sunny) days. A preview of the coming months in Colorado Springs - I hope.

Knowing we have another big day tomorrow - I better get to bed. I sort of thought I would have a relaxing time while Chloe napped & slept and went to appts. Not so...haven't read one page in any of the books I brought. I did get to read a little bit of my Parenting magazine after Chloe went to bed & ended up in a laughing/coughing fit while reading this...

What words have come out of your mouth that, before becoming a mother, you never imagined yourself saying...

We don't play with our poo, please.

This is not yelling. THIS IS YELLING!

No more wetting your hair with your spit, okay?

Wow, vegetables, yum, yum, yum.

Nobody touch anybody ever again! (this is where I lost it!)

Get the plunger out of your mouth. Yucky.

Who couldn't add a few to that? Things like..."Back up so I can flush." or "Those are your privates, if everyone was supposed to see them, they would be "publics" - now put your underwear on!"

Okay - now I am just humoring myself. Thanks for all of your messages & prayers.

Love,

Amy

Day One

We started our morning by getting everything we unpacked all packed up. We took a shuttle to Texas Children's Hospital where we were met by Dianne - the study coordinator. The first three photos are in the hospital lobby. She showed us to our lovely room on the 10th floor. It is a big room with room darkening shades :), lots of closet space and a private bath. It's nicer than the Best Western than we were in last night but not quite as nice as a Ritz Carlton! See Chloe on the couch with Sasha (4th photo). Chloe's nurse is Sherrie & she was quite nice.

Our first appointment was a visit to the eye clinic. Chloe hates eye drops and they put in three different types. In the clinic we received bad news & good news. The bad news...Chloe's eyes are much worse (far-sighted) than the MD in Colorado Springs had said. The good news...the MD here would NOT put glasses on her at her age. He said that unless her eyes cross that the glasses won't do her any good.

After the eye clinic, Chloe couldn't eat until her swallow function test. Her test was at about 1:00pm. The 5th photo is of Chloe & Sasha on the way to the swallow function test. She as a real trooper. She didn't like the getting ready for the test part (see 6th photo) but she did a great job eating the barium filled pudding, barium drink and the barium covered yogos. She was so hungry. More good news/bad news. Good news...she didn't have any food go into or near her trachea. Bad news... she may need more therapy as she is not chewing her food very well. She doesn't push it back and forth across her mouth. She uses sort of a rudimentary chomping motion. The speech pathologist thought maybe she didn't like certain textures (meat) because she cannot chew them well. This, however, doesn't explain her love of crayons, marker tips, play-dough, or rocks.

The highlight of my day was meeting Dr. Potocki. She asked a lot of questions & told us a little bit about her & Dr. Lupski. She will be back tomorrow. Actually, this visit was trumped only by the fact that Dianne told us that Chloe is doing well compared to some of the kids they have studied. She isn't speaking any better but Chloe was a signing machine today (thanks Tamara). Dianne was impressed by this. She was most impressed, however, with Chloe's ability to jump!

Our third appointment for the days was a hearing check. Chloe was a good girl - sort of. She didn't tolerate the ear plugs that they wanted to use for the test but she did a good job in the sound room. She had to place pegs in a board every time she heard a sound. She did a very good job at that. She also passed the same test she had as a newborn hearing screening. They concluded that she could hear very well in at least one ear. Because she would not wear the ear plugs, she has to re-take the test in the morning. She was a little worn out by the hearing test and didn't want to cooperate. They said a "do over" would be best to determine if she was hearing primarily out of one ear or the other.

As you can probably imagine, Chloe had no nap today. So, at about 4:15pm, we came back to our room and I was in the quandary every mother faces. Do I keep her up because it is too late for a nap or put her down knowing it is too early for bed. I chose to keep her up and we went to the library. She looked at books filled with babies. Another little girl walked up to her & Chloe tried to show her a photo of the baby by saying "baby". The little girl screamed, "I am not a baby. Mommy, she called me a baby." At first Chloe didn't catch on and continued to try to show the girl baby photos and the girl kept yelling and saying she wasn't a baby. Then, Chloe caught on and rather than trying to show her baby photos, she just kept saying "baby" to the girl to get a rise out of her. It worked every time!

We went back to our room (see 7th photo - Chloe in bed eating dinner). She looked so little eating in that big ole' bed. After dinner, we watched a Brainy Baby show. At around 6:00pm the nurse informed me that they would like to put Chloe in a crib for the night. Chloe wasn't happy about that. I was okay with it except when they said that they would remove the real bed - bummer. You can't have both so I am on the "futon" in the room. She went around to everyone in the hallway (nurses, aids & housekeeping) and told them "nigh, nigh" and at about 6:30pm, Chloe all but passed out.

I was worried about Chloe going to bed without any Melatonin tonight but I don't think it will be an issue. She is already asleep. I just hope she stays asleep. I am in my "office". Yes, I have pulled a chair and the bedside table into the bathroom so that I can write this and finish filling out paperwork. I am tired too and will probably hit the sack in just a few.

Thanks for your comments via email & blog replies and thanks especially for your prayers! We are doing great so far! Tomorrow we see an ENT and I spend hours with a behavioral MD talking about Chloe. Cannot remember what else is on the agenda but I will update tomorrow night.

Houston...At long last!

We are finally here!!! It was a fun weekend preparing for our trip. Joe left on Friday for a church retreat. My friends and I had a garage sale on Saturday. Saturday night, my friend Laurel and her two boys spent the night. Chloe was exhausted after a busy day and went to bed at 6pm. She got up at about 5:30am, ready to head to Houston. Laurel was a lifesaver - she fed the kids, loaded the car, cleaned up, etc. It was Quinn's first official "sleepover" with a friend. Everyone had a great time and it made getting ready a whole lot more frantic & fun!

Quinn said he would call me every day but then later informed me that he had conference calls all night tonight, one right after the other. Go figure...

Kiki (Aunt Carrie) took Chloe and I to the airport. I realized last night that this would be the most time Chloe and I have ever spent alone together. The hazards of being a second child, I guess. At any rate, coming the Children's Hospital in Houston wasn't exactly what I had thought would be our first "girl's trip" but we are going to make the best of it!

Chloe was perfect on the flight! We read books, she hid in the pillow case from the airline pillow, ate lots of snacks and opened and closed her window at least 52 times. After our two hour flight, we took a 45 minute cab ride to our hotel. She was a good girl on the cab ride too.

After we checked in, we decided to walk to the park. It was probably almost 1 mile away and Chloe ran the whole way. The Houston Zoo was in the park so we went to the zoo! Chloe loved the birds & the monkeys. We had a great time looking at animals and she devoured a big salty soft pretzel! Do you remember when Dustin Hoffman played "Rainman" and all he talked about Jeopardy all of the time? "It's time for Jeopardy, Jeopardy's on soon, I don't want to miss Jeopardy", etc. That is exactly how Chloe is with babies only times a million. Next time you go to the zoo, check out how many babies you see. Keep in mind that strollers (even when occupied by a 5 year old) also means baby. I bet I heard "baby" over 300 times while at the zoo for two hours. "Baby, see, Baby, Hi, Mommy - baby". Ironically, she didn't care at all about the baby elephant!! I thought he was the cutest baby in the entire zoo.

I forgot to bring my camera to the zoo so the photos aren't that great (phone). When we got back to our room, Chloe kicked back for a while, had some milk and then decided it was immediately time for "nigh nigh". She found her jammies, laid down and demanded I put them on. Once she decides it is time for bed... it is time for bed!!

We have a busy schedule this week as Chloe is being examined from head to toe, inside and out. She will be seeing both Dr. Potocki & Dr. Lupski. Dr. Lupski also has CMT. I cannot wait to talk to him about living with CMT. We are supposed to be at the hospital around 7:30am but the shuttle leaves at 7am so it is time for bed for mommy too.

Please pray that Chloe tolerates all of the testing, that the people we see have good things to say about Chloe's health, behavior and progress and that we aren't too close to the maternity ward (babies)!

I will let you know what we find out as the days progress!

Amy