A new routine

Night 3 of the CPAP Machine = Maggie asking to have the mask put on! So, who was I to deny her? She kept it on and wanted it hooked up. She fought a little bit & wanted me to read to her while she tried to get situated. So, we read 3 books and she fell asleep. I waited until she was asleep to leave the room. She slept through the night and for 13 hours. Yes, folks!

Friday night was a different story. She wasn't as anxious to get the mask on. It was a HUGE fight to get it on, but once it was on, she was ok. We read the same 3 books and she fell asleep. She woke up a few times in the middle of the night but was able to put herself to sleep. That next morning she woke up and took the mask off her face (although with all the straps, can't get it off her head)

Saturday night was another fight and again woke up a few times, but seemed to tolerate it a little more. She woke up super early (thanks to time change) and when I went in to get her, she had yanked the tubing out of the machine and was in the bed, with all the straps criss-crossed and all of the place. It took me a few minutes just to get the darn thing off of her.

Tonight, she put the mask on without any struggle and laid down right away. We only read one book and she fell asleep. This is where the time change came in handy :)

She is also doing really well with the machine during her nap time. She tends to keep the mask on during this time. Of course, it's only for a few hours. She has been taking a little bit longer naps as well.

I've been trying to monitor her behavior and such over the past few days to see if the CPAP is helping in any way. It's hard to say. I will say that she is waking up very happy, not that she was an unhappy child before. But maybe it's just because she's happy to have the mask off :)

I do believe that the CPAP is helping and that she will continue to improve. I'm hopeful that the day will come where she can put it on herself and get situated without any troubles.

Note to self: switch out books in Maggie's bookcase in her room, if we're going to be reading in her bed each night. I don't know how much more I can take of "No More Diapers for Ducky", "If You Bring a Mouse to School" and "Do You Ears Hang Low" ~ I seriously don't even need the books anymore. They're forever ingrained in my head! Even Maggie will say some of the words before I do :)

Painting Pumpkins

CPAP Machine

Maggie's CPAP machine was delivered yesterday.

Maggie freaked out.

We spent 30 minutes just trying to adjust the velcro straps on the headgear/mask.

Maggie finally allowed us to leave the mask on for about 2o minutes (not connected to the machine)

That was it. Nothing else was to be done.

Brought out the mask again tonight.

Maggie was eager to "play" with it.

She kept it on about 20 minutes or so and then took it off.

Will try to see what we can do tomorrow.

It's going to take a while for her to get used to it.

We're trying to be patient. Trying to get her adjusted to the idea.

Don't want to push it but she also desperately needs to be on the machine.

Hard lines to juggle.

Pray for Momma & Daddy.

Pray for sweet Maggie Joy.

You did what?

For all of those parents out there who have to deal with the government (aka foster care system) and/or TCH (Texas Children's Hospital) you will definitely be able to relate to the following story:

When we met with Maggie's Pulmonologist at the beginning of October, we requested that he write a letter regarding the severity of Maggie's sleep apnea, so that we could submit it to the subsidy board for review. As of right now, Maggie does not qualify for any extension of her benefits (known as subsidy), due to the fact that she is white, under the age of 6 and does not have any health problems. However, when she was diagnosed with the sleep apnea, that changed. In order to keep her medicaid benefits, we needed to get a letter from her doctor stating her diagnosis with some very specific language to be added. Dr. M was very nice and accommodating, saying he'd be more than happy to write the letter for me. To my surprise, he personally called me about a week later to let me know that the letter was done and that I should receive it in a few days.

I never received anything (not shocking!) and followed up with the nurse, leaving multiple messages. I never heard back. I spoke to someone a week ago & they said they, too, would follow up with me. Another week passed...nothing.

So, I called back today and spoke to another nurse. I explained to her that I was looking for the letter. She pulled up Maggie's file and said: yes, the letter was faxed to the PCP (Primary Care Physician) on October 15th.

Wait? I'm sorry - what did you say? She repeated herself and said that they indeed faxed the letter to the PCP.

You did WHAT?! Why? She didn't have an answer for me. She just said that it went to Dr. XYZ. Wait. Who is that? The nurse seemed surprised. Um, that is not Maggie's PCP. I've never heard of this doctor. How can you possibly send her medical records to someone that has never seen my daughter? Isn't this a violation of medical privacy? Why wasn't I sent a copy of the letter? Aren't all parents supposed to be cc'd on any correspondence? And I think I asked a few more questions....I was beyond being nice at this point.

Ok. Fine. You screwed up. So, can you please just fax the letter to me, since I am the one who requested it. The nurse said no, she is not able to. Once the letter was faxed out, it was sent to Medical Records and I'd have to contact them for a copy of the letter.

You. Have. Got. To. Be. Kidding. Me.

I call Medical Records and they confirm that I should've received a copy of the letter, but they can't provide anything to me verbally or send me a fax. They have to fax the release form to me, have me complete it, mail it to them with a check, they will copy it and mail it back to me.

So, let me get this straight. I requested the letter. Dr. wrote the letter. Someone sent it to the wrong doctor. No one sent me the letter. And now, I have to pay to get a copy of the letter and hope to get it in the next 2 weeks? Ok...well, as long as I have it straight.

I got the form, filled it out, wrote the check, & dropped it at the post office today. Hopefully we'll get it soon.

Now, the real kicker will be if the doctor put the right language in the letter. I really REALLY hope so!

More fall fun

Yesterday we attended a fall festival for foster kiddos. 1st United Methodist Church in The Woodlands has a huge outreach ministry to foster families and they opened up their festival to all the foster care families in the surrounding area. We met up with some of our favorite friends and it was great to just be able to sit and chat and not have to explain anything to anyone...because everyone was in the same boat.

They had a great petting zoo, lots of bouncing thing-a-ma-jigs....I have no idea of what they're actually called, free food and a great hay maze that seriously took us about 20 minutes to get out of.

Here are some highlights from the day:

Once again, Maggie has no fear of the animals. She had no problem putting her hand in to try & pull the turtle's head out!

Petting the miniature donkey

Chasing a bunny

I'm pretty sure that this gavel weighed more than Maggie!

Lots of fun in the playground

On the bouncy-thing with her friend, Sariyah

I just think that this picture is too funny!

Maggie & Samari are just a few weeks apart. Big girls drinking from big girl cups.

And here is a collage of our time through the hay maze

Oh how I love this time of year!

Spirited Child

The word that distinguishes spirited children from other children is more. They are more intense, persistent, sensitive, perceptive, and uncomfortable with change than other children. All children possess these characteristics but spirited kids possess them with a much bigger depth and range than others.

It's difficult to describe what it is like to be the parent of a spirited child. The answer keeps changing; it depends on the day, even the moment. How does one describe the experience of sliding from joy to exasperation in seconds, ten times a day? How does one explain the "sense" at eight in the morning that this will be a good day or a dreadful one?

The good days couldn't be better. The dreadful days are another story. On those days, you're not sure you can face another 24 hours with your child. It's hard to feel good as a parent when you can't even get her socks on, when every word you've said to her has been a reprimand, when the innocent act of serving pizza instead of the expected chicken nuggets incites a riot, when you realize you've left more public places in a huff with your child in 2 years than most parents do in a lifetime.

You feel weary, drained, and much too old for this.

On the bad days, being the parent of a spirited child is confusing, frustrating, taxing, challenging, and guilt-inducing. You may wonder if you are the only parent with a child like this, scared of what is to come if you don't figure out what to do now in the early years.

Webster's dictionary defines spirited as: lively, creative, keen, eager, full of energy and courage, and having a strong assertive personality. Spirited - it feels good, sounds good, communicates the exciting potential of children, and yet honestly captures the challenge faced by their parents. When we choose to see our children as spirited, we give them and ourselves hope. It pulls our focus to their strengths rather than their weaknesses, not as another label but as a tool for understanding.

Maggie is my spirited child.

There are 5 distinct characteristics of a spirited child:

1. INTENSITY: The loud, dramatic spirited child is the easiest to spot. Maggie doesn't cry; she shrieks! She's noisy when she plays, when she laughs, and even when she takes a bath (singing at the top of her lungs, etc). There is rarely a middle of the road. She never whimpers; she wails. She can skip into a room, smiling and laughing only to depart 30 seconds later inflamed. Her tantrums are raw & enduring.

2. PERSISTENCE: If an idea or an activity is important to Maggie, she can "lock" right in. She is committed to her task, goal-oriented and unwilling to give up. Getting her to change her mind is a major undertaking. She is not afraid to assert herself.

3. SENSITIVITY: Keenly aware, Maggie is quick to respond to the slightest noises, smells, lights, textures, or changes in mood. She is easily overwhelmed in crowds by the barrage of sensations. Getting her through a shopping center, long services, fall festivals or family gatherings without losing her to a fit of tears is a major achievement. Dressing can be a torture. A wayward string or a scratchy texture can make clothes intolerable. Every sensation and emotion is absorbed by her, including my feelings.

4. PERCEPTIVENESS: If I were to send Maggie to her room to get dressed ~ she'll never make it. Something along the way - perhaps something on the television - will catch her attention as she walks by and she'll forget about getting dressed. It can take 10 minutes to get her from the house to the car. She notices everything - the latest oil spill, the white feather in the bird's nest, and the dew in the spider web.

5. ADAPTABILITY: Maggie is uncomfortable with change. She hates surprises and does not shift easily from one activity or idea to another. If she was expecting hot dogs for supper, heaven forbid if we should decide to eat something else. Adapting to change, any change, is tough: ending a game in order to come to lunch, changing clothes for different seasons, getting in the car, and getting out of the car.

Being the parent of a spirited child can be lonely. To ignore Maggie's tantrums is ridiculous. She can rage for an hour because I opened the door when she was expecting to do it for herself. Send her to her room for a time-out and she is liable to tear it apart. There is no distracting her from something she wants. Even if the something is off limits, she will climb over, under, or around the barriers to return to it. As a result, I can feel overwhelmed, wondering what I am doing wrong, chastising myself for not "getting control" and thinking that I am the only parent in the world with a child who acts this way.

As we go day to day, my hope and prayer is that we can learn & grow to create a family where spirit thrives! I want to concentrate on strengths, appreciate her tender heart, and enjoy the delights of my spirited little girl.

*Excerpts from Raising Your Spirited Child by Mary Sheedy Kurcinka* I've just started the book but already finding it very helpful!

What a hoot!

For some reason, Maggie loves owls. I think it's because she's really good at "hooting" and enjoys hearing herself :) So, when I was at Target one day and saw this on an end cap, I just knew I had to get it.

(yes, that's a pillow up on a shelf)

Which led me down another aisle to this:

*is this seriously not the cutest lamp you've ever seen?!?!

Which of course, led me to do this:


And the cutest thing right now is that before Maggie goes to sleep, she has to tell everyone goodnight. "Night night owl. Night night birdie. Night night other birdie (ha!). Night night squirrel. Night night other owl. Night night other owl."


Now, isn't that a hoot?!

School Pictures

Maggie had her first set of school pictures taken last week. We haven't seen them yet, but her teachers assured me that she was quite a hoot...posing, smiling, hamming it up! Can't wait to see them.

So, since I didn't want to wait, I took a few of my own before dropping her off. Here are the many faces/expressions of Maggie Joy :)

p.s. I'm not sure why Picasa cuts off the top of Maggie's head in every picture when I make a collage....

Annual Crews Crew Pumpkin Patch Extravaganza

Every year we get all the "Crews" grandkids together at a pumpkin patch and take WAY too many pictures :) This year we decided to head out to a new pumpkin patch, TGR Exotics Wildlife Farm. I had been there the previous week with my friend, Jocelyn and her kiddos. I knew that the kids would love being with all the animals. It's not much of a pumpkin patch but we did manage to get in a few pictures with some pumpkins!

Because of all the pictures taken, I decided to just put up a collage of each kiddo...trying to capture the best of the best:

~CIERRA~

~BOBBY~

~GABRIELA~

~ISABELA~

~MAYA~

~SAMANTHA~

~MAGGIE~

~COUSIN/SISTER LOVE~

And oh how they all love each other sooo much! It's such a blessing that we all live so close to each other, so that we can enjoy moments like these.

No relief in sight....

Maggie has been coughing for 6 weeks now. Yep. You read it right. 6 weeks. We've been to the doctor 3 times. Each time, they just give her another combo medication - antihistamine/decongestant/cough suppressant. The only thing that they seem to do is make my active child MORE hyper!

I have tried everything....

~ putting books under the head of her bed to elevate her head
~ warm humidifier with vapor steam
~ breathing treatments 3 times a day
~ breathing treatment with just distilled water
~ homeopathic cough syrup (2 different kinds)
~ rubbed Vicks Vapor rub on the bottom of her feet and put socks on

nothing is working. I'm almost at the point of taking her to the Urgent Care center to see if someone might be able to help. She's not sleeping, therefore, we're not sleeping. She has seriously only slept through the whole night twice in the past 6 weeks. She is actually asleep right now, however, hasn't stopped coughing in over an hour. How that is even possible, I don't know. I also think that this crud has really kicked her sleep apnea in. The specialists have confirmed that she needs to be on the CPAP machine and we are just waiting to hear from the sleep clinic on when it will be delivered.

Any suggestions on what we can do? In the meantime, please pray for our sweet girl. Poor baby.

You don't have to be perfect....

An article was forwarded to me yesterday and then I also found it posted on a friend's blog tonight. These PSAs are so funny and yet so true. It's great to see more information being presented in a positive way towards foster care and adoption.

Check out these great PSAs:

Meant to Be

Nobody's Perfect

Here's to a positive campaign and lots of kiddos being brought home to their forever families!

Exotic Wildlife Farm

I had been looking for a new pumpkin patch to take all the kids to this year and somehow came across the TGR Exotic Wildlife Farm. It looked pretty cool and it would be a little different than going back to the Christmas Tree Farm. But I wanted to check it out first, before dragging the whole Crews crew there.

On Friday, I made plans with Jocelyn to hang out because Saturday was supposed to be sunny and beautiful. We were going to take the kids to the park - let them run, exert energy, etc....however, the rain storm that came in Friday nixed that.

Jocelyn called on Saturday morning and said "well, so much for that...but we are still going to do something right?!" :) She then started to talk about this new place she wanted to check out as a possible site for a birthday party...and sure enough, it was the same exotic wildlife farm.

So, we set out to meet at 3pm with 5 kids under the age of 2 1/2. Yep. That's right. Me with my 1, and Jocelyn with her 4!

The kids just loved it there. They had so fun playing in the feeding troths filled with corn.

Maggie sure does love the little ones....

There were so many different animals for the kids to explore and play with. Maggie just couldn't get enough of them all. She has absolutely NO FEAR when it comes to getting up close & personal with the animals.

Piglets

Shetland Ponies

Chickens

Pigs

There was a large area that was filled with goats/kangaroos/pigs. It was so funny to watch the kids...as soon as the 3 of them went for the gate, the goats ran away as fast as they could :) Here they are hanging out, waiting for their return.

But the goats finally decided to brave it out and return...

Maggie's favorite of all the animals were the camels. She couldn't get enough of their licks & kisses!

And lastly, some fun with the pumpkins

So much fun & so many sweet memories made with our friends. Happy Fall everyone!