Cute Kids

Despite the trials we go through as parents our children are a constant source of joy too! although I don't seem to have the camera out as much these days (they're too fast for me!) I do still get some great moments...

Pizza for lunch! Emma gets the slice...

Toby enjoys the crust.

Emma talks to her great grandma - technology is wonderful!

Toby hones his skills, the second my back is turned...

so I bring in the big guns! (Emma loves to go in there, so they play together!)

This is what Emma does with her shoes after she takes them off! It's the little things...

Drinking Games

I now realize that the process of teaching Emma to eat has not been much different from other children - maybe just slower and more cognitive. Going through the process with Toby, who is not as excited by food as the rest of us, has shown me that.

There is another reason though - we've hit something that is more difficult! You expect to have to teach your kids not to "drink" (alcohol that is!). After all drinking is one of the first actions they learn and excel at, and often put it before eating. Not for Emma - yet!

Drinking is now Emma's main hurdle to leaving the g-tube behind. For some time now we have given Emma drinks, mainly water and juice. it was not until she was quite old though.

The sucking reflex that babies are born with was interrupted by the Moebius Syndrome. She literally could not suck on a bottle. The reflux created a risk for aspiration. Drinking was shelved until a later date.

Throughout the feeding process drinking was not given much attention. With Emma eating so wonderfully we no turn our attention to the fluid intake. Unfortunately creating thirst is not something we can do in the same way that we created hunger. Dehydration is quicker and serious.

And to make matters worse, Emma has decided that she does not like to drink!

We've resorted to drinking games!! "1, 2, 3 Everyone drink!" has been working so far.

Truth hurts

Emma is now on a 3 week course of antibiotics for Lyme Disease. It's too early to do a blood test for it, but the rash appears to be the classic indicator. It is fairly common in this region (great!) and early treatment should cure the infection. That said, it has been a tough morning.

I am thankful that Emma is blissfully unaware that there is anything to be concerned about. Although she was probably perturbed by my behavior. For example, this morning she said to me "What you doing Mummy?" My response - "Just trying to hold it together Em."

My mind was racing with all the implications of this new health emergency. How would it interact with the other challenges she faces?

I was angry. "Why my kid?", sure, but more "why Emma? Hasn't she had enough?" (You should realize that I am assuming a worst case scenario here, because that is what I do!)

I was confused. "How? How? How?" She hasn't spent more than a few minutes outside this week, and just by our house or parking lots! Is the diseased bug still in the house? Could the rest of us be in danger? Etc. My hatred of bugs, and avoidance of grassy areas has been increased. Would the township permit me to concrete our entire property?

Although Emma is the one who has the Lyme Disease, part of my struggle today was for myself - hey, I'm being honest! The fear of going through more medical trials, watching helplessly - tough.

I'm doing better now.

The challenge for me regarding my faith in these kinds of situations is one that I struggle with constantly, just more so during trials. You see, the core belief - one that you need to have in order to fully grasp the gift of salvation - is that God loves you unconditionally and has the very best in mind for you. Scripture declares this:

"For God so loved the world that he gave his one and only Son, that whoever believes in him shall not perish but have eternal life. (John 3:16)
He who did not spare his own Son, but gave him up for us all—how will he not also, along with him, graciously give us all things? (Romans 8:32)

It's really hard to grasp for most of us since perfect love is not something that's common among people! We often suspect ulterior motives, or "honeymoon period." The truth is that with God, He is perfect, and so is His love for us. When we have turned from sin and asked for His forgiveness through Jesus Christ, He gives us just that - forgiveness.

With our sin wiped clean God is free to love us and pour out His best for us.

Trouble is that doesn't mean we will avoid trials! So when the trials come it can be tough to hold on to the truth of God's perfect love and will for us.

Since it is God's love, and provision of a future in Heaven, that provides us with eternal hope to get through the trials we face in this life, we can get stuck in a cycle of hopelessness.

Thankfully I am learning (finally) to stop this cycle by holding onto the truth of God's love for me (and Emma...). No matter what we are going to face, Lyme Disease or something even worse, it doesn't change who God is or what he wants for us.

Parents allow their children to face challenges and consequences to develop good character and maturity. That is love. While all the while being available for encouragement, support and strength.

It's good to know.

Bullseye

Everyone makes fun of me for being a hypochondriac. I don't like the fears I get about sickness and stuff, and on those rare occasions I'm right I get no pleasure from it.

I'm praying this is not one of those times - I want to be wrong.

On saturday night Emma developed a red welt on her arm which we assumed to be a bug bite. Yesterday it was twice the size.

Today it looks like a bullseye.

Since I came here and heard about tics and Lymes disease I have had a bad feeling about being outside! Whether this turns out to be that or a bad spider bite, it's not going to help my dislike of the outdoors.

Please join us in praying for Emma today.

Mail treats

We got a package in the mail today from my parents. Lack of chocolate aside (!) it was great!

Both kids got some socks, and Emma got some wellies (google it!) and some slippers handed down. She was thrilled with her "pretty shoes"!

She also got two 12 piece puzzles. The timing was perfect as Melissa was here for therapy. We were both open mouthed as she completed them with minimal intervention in under 10 minutes! Toby could probably eat them quicker than that!!

Random phone pictures

Big smile

One to send to Daddy

All done at the doctors

Funny hat

Toby conserves energy

Mmm, cheeseburger

Silly faces with a friends at church

sleep-inducing food

Playing piano with Todd

Quote of the Day

The scene: The four of us driving home from the grocery store. I'm typing an email on my iPhone...

Emma: Me play my game?
Me: No.
Emma: Sorry? Sorry? I didn't hear you.
Me: I said no.

(Scott informs me that saying "Sorry?" instead of "What?" is a British thing.)

That one only narrowly beat out this earlier conversation while I was feeding Emma her lunch...

Emma: So. So, how was your day?
Me: Good thanks. How was your day?
Emma: Busy.

Gross

After one final stomach emptying around 6am this morning I have been doing well! I did get a couple hours of sleep, and Toby helped by sleeping in until 6am.

Not wanting to trigger a repeat I spent the morning sipping lemon-lime Gatorade (like lemon squash with Lucozade properties in the UK!). I put Toby down for his nap at 8am and hopped in the shower - no need to look as bad as I felt!

Shortly after the crew arrived to work on the roof. They started banging around ripping the old shingles off, which scared Emma. She came and watched Dora in my room while I did my hair. Then Toby was up again, having barely slept, and we moved downstairs.

Toby had a well visit at the doctors at 11.30 so we had the workers cease operations so we could leave the house.

All went well at the doctors and the 20lb 9oz Toby got up to date with his shots. I almost had a cow though when the doctor (otherwise totally awesome) put Toby down on the floor to crawl around!!! If you know me at all you know I clorox wipe our shoes after a trip to the hospital, so Toby's hands and knees all over the floor creeped me out big time.

I remained calm until he left, making sure to keep Toby's hands out of his mouth, before washing them thoroughly in the sink!

On the way home we hit traffic and took a detour, which happened to go past McDonalds. I've been craving McFlurry's lately but I thought it would be good to have some plain ice-cream (M&Ms on the side!), to feed my appetite, but no biggy if it came back up!

Emma started calling for some of my ice-cream, and when I was able I gave her a spoonful or two. After I ate the last spoon Emma started saying "my turn." I explained there was none left and to my utter surprise she flipped out screaming "IT'S MY TURN!"

That was the first sign of a toddler tantrum I can remember, and I'm putting it down to being naptime! You see I was driving around as Toby had fallen asleep and I knew there would be no peace for a nap at home.

When we got home I took the kids out of the car. I saw Toby had something in his mouth. Not sure what it could possibly be I pried open the jaws of the beast only to find he had put one of the band aids from the injection site on his leg in his mouth to chew.

Despite all the grossness I did not throw up!! Good sign.

Inevitable

Ugh, I'm sick. I was expecting it though.

On monday night Toby started throwing up and moved on to diarrhea Tuesday night. He's getting his appetite back now but still sick.

The doctor said it was likely a virus he's seen going around, not complications of pneumonia.

When the kids are sick I really spare little thought for my own protection, in fact I figure I can help by giving Toby antibodies in my milk. Even so it is horrible to be sick. And they're coming to do the roof tomorrow so no peaceful rest!

Today was special though. I was laying on the floor with the kids when I suddenly felt a wet gummy mouth on my forehead. Toby sat back and laughed before doing it again. I soon realized he was kissing me.

When I would pucker up and make kissing noises he would kiss me again. That made my day!

Bye bye Brooke

Yesterday we said goodbye to Brooke, Emma's speech therapist. She is moving to Las Vegas. Although Emma's therapies will be ending when she turns 3, that's still a few months away!

Brooke has been coming to see Emma since she was just a few months old, back when she didn't make a sound unless it was crying. First every two weeks, and every week for over a year.

We made a gift for Brooke to say thank you and remember Emma, her admitted "favorite."

It wasn't until yesterday when I really started to consider just how important Brooke has been to Emma and our family. Less than a year ago Emma was still using "eh" as her primary form of verbal communication. Brooke gave us encouragement, direction and when needed, a push, to teach Emma to talk.

And then there's the feeding! When I was scared to try something new Brooke would push me. If I didn't believe Emma would be able to handle it, Brooke did it anyway! In fact we would not have discovered Emma could drink if Brooke hadn't been so proactive.

Although Brooke says I was one of her more cooperative moms there were plenty of times I did not think we were making progress and questioned her expectations. There was no way I could fit in three feeds every day!! It seems so silly now, but I know it was difficult at the time.

Brooke never gave up on me though, or losing patience with me! That means a lot. And it paid off. I feel ready to take control of Emma's feeding schedule, at just the right time.

I won't be doing it all alone, yet. Melissa is still coming for occupational therapy and will be coming for 2 hours instead of one to also work on Emma's oral motor skills - especially drinking and feeding herself.

We've also decided that when the nursing approval expires in September that we will let it go (rather than appeal and fight to keep it). It feels like we are coming to a natural turning point and it's time that we reclaim our schedule!

For 3 years my daily life has been planned around doctors appointments, therapy sessions and of course, the daily nursing visit! As strange as it seems the less of these we have, there is a greater sense of freedom and possibility.

Hair today

On Sunday evening we set up a rather unorthodox hair cuttery, by the Thompson's pool!

Gina's sister-in-law came to give her son his first haircut, and I cheekily asked if Toby could get in on that too. Melissa kindly agreed, and Toby went first...



That's right, I went with the faux-hawk!!

I took the opportunity to get Emma a little trim too...

A big smile because it was all done!

Little Star

Last Tuesday we were home as usual, keeping cool in the A/C. Toby was playing and I was pumping, watching something on the TV. After a minute or two I noticed Emma sitting at her piano.

I tuned in to what she was doing and without her noticing I grabbed the camera and caught the end of her song. See if you can tell what she's singing, and watch out for the little diva move at the end!

Time flies

I can't believe July is almost over already! I haven't posted any of the videos or pictures I took since July 13!! you must be bored with all the writing - I know you love the visuals!

Lets go back in time, to July 13th:

Emma's not the only one who likes to sing it loud...

This is Toby's favorite hang-out,

which wouldn't be so bad if the chairs were a little heavier and more stable! So I had to figure out a way to corral him in the living room.

Introducing the play pen...

The ottoman strategically blocks the stairs, which have become Emma's space away from Toby's grabbing hands. His toy basket (top left) blocks the corner where Emma's little table and chairs are, and at the bottom his chair and exersaucer block the path to the dining room. At least until he figures out how to climb over them!

I don't keep him penned in all the time, just when Emma and I need a break!

This weekend a dream of mine came true. On Saturday afternoon we were all down for a nap but we could hear Emma was not sleeping. In fact she was going around all the toys on her bed saying "Hello, my name is Emma/dog/horse/sleepy Dora" etc. (Scott has been teaching her how to introduce herself!)

I went in to explain the need for sleep and found myself immediately inviting her to come and nap in with us. Se readily agreed and in she came - no wires attached! I'm not sure which of us was more excited.

It took her a few minutes, but we all soon fell asleep. I got up before the others and when I came back in Emma was awake. I asked her "Are you sleeping in my bed?" She grinned and said "Yes." Then putting her hands up to her face she said "Take a picture Mummy!"

Stay tuned this week for details of Toby's first haircut - it's a good one!!

All at once

I'm starting Emma's potty training today. I always planned to go the bootcamp way of no diapers and potty trips every 15 minutes. I've heard it works well after an intense couple of days.

However, I'm starting to realize that some things could be more stress than they're worth. So I got some Dora pull-ups, brought the potty downstairs and am aiming to sit Emma on it every 15 minutes or so, as Toby allows!

I have reward stickers which I know will work well after they are awarded a few times. Once the pull-ups run out I will go to the next phase (or maybe get just one more pack!

I don't feel like I'm copping out because on Monday I will also be starting the new feeding schedule for Emma. That will involve it's own level of consistency and time awareness.

I am also starting brushing Toby's teeth each day. That took a while for me to get consistent for Emma, but hopefully it will be less of a challenge with Toby.

Good news and good news!

I'll go in chronological order for a change!

Yesterday afternoon the insurance person came (a woman from Texas!) to assess our claim. Scott was here to meet her, as was the contractor who alerted us to the damage we hadn't even noticed.

I have not been involved with any of this, which is both surprising if you know me, and a sign of progress with my control issues!!

Anyway, the story I heard later was that they were heading up onto the roof to check out the main damage. Scott went first, then Paris (from Texas) and third was to be Don the contractor. After a couple of steps on our pretty steep roof Paris looked up at Scott and told him she did not have a good footing. With fear written all over her face she started to slide down the roof!

Scott called to Don to steady the ladder since he had not yet ascended. Paris stopped at the edge and tried to swing around the ladder. She would have swung the whole thing over but Scott grabbed her by the arm and suggested she climb over the top!

They all got down fine and she opted to look at the photos Don had taken previously!

I heard all this as we waited for Paris to write up the claim (which was fully accepted) and bring us the check. When she came in I met her and she was still quite shaken by it all. she explained that her husband had actually fallen off a roof a couple years ago doing the same job and had survived but was very much damaged.

During our conversation she referred to the storm as "an act of God." She's not wrong - through this storm we have been hugely blessed!! At the very least a new roof increases the value of our home, and we also get to do some of the work we had been wanting to do on the aesthetics! Oh, and as a surprise bonus, they also covered the food we lost when our two freezers were off for two days.

That great news took the dread out of the prospect of dragging Emma to the hospital for the second day in a row! I do love getting to spend time alone with her (thanks to Ellen for watching Toby) but who can expect a toddler to be that tolerant! The wait yesterday meant she was begging to go home as soon as the doctor came in. I did not relish the same today.

Apparently I underestimated Emma! While I didn't have to sing Twinkle Twinkle Little Star 18 times on the way there like yesterday, she seemed accepting that we were going to the "doctor house" to get her feet looked at. The promise of playing with my phone was a help too!

She was cheerful the whole time, chasing me down the hallways we had to walk, arms outstretched to catch me if she could. The waiting room was unusually quiet and we were called in almost immediately. (Emma made a point to push her little chair under the little table and tell me she'd done it!)

When the [slightly eccentric] doctor came in Emma was absorbed in a phonics game. The doctor seemed less concerned about why we were there and more impressed by Emma's mastery of the iPhone.

When we did finally get down to discussing the pain in her feet and flat-footedness he was unconcerned. She walks well and as I had to admit she has not complained of hurting since I bought her different shoes with a more sculpted sole.

Emma does indeed have mildy flat feet, however orthotic inserts will not help. In fact he actually said that consistent use of inserts in a flat-footed child merely produces a flat-footed adult who depends on orthotics. You can not correct the problem.

Sweet. Nothing to worry about here, except maybe a higher shoe budget in the future!

So, good news all round

ch - ch - changes!!!

Things are changing so fast and I'm doing my best to keep up!

The CPAP has been off for almost a week and Emma's doing great. She seems to be sleeping well, which is a sign she's breathing well. Without the CPAP though, our main justification for having 8 hours of nursing care each night is gone. The next review by the insurance is September 6, so potentially we have until then to enjoy the extra reassurance.

Right now Emma is still on the pulse ox, monitoring her SATs/oxygen level, during sleep and a continuous tube feed with the pump over night. That feed provides over 50% of her daily caloric intake and some hydration.

Today we met with Emma's GI doctor and dietician. The doctor was thrilled with her and labeled her eating as "extraordinary" (ie. great!). He left pretty quick since all that remained to be discussed was how to transition her off the tube feeds!

My idea is to go back to bolus feeds during the day (we went from 4 to 1 over 12 months) and reduce the amount she gets overnight. If we can eliminate the overnight feed completely we won't need a nurse, making the loss of nursing easier to bear!

However, the reason we reduced the bolus feeds was to increase her motivation to eat more food orally. So it is going to be a challenge to find the balance between supplementing and reducing her appetite. I'll start out small initially and will need to make sure her oral intake also continues to increase.

An additional factor is hydration. Emma does not drink much, in fact no more than an ounce of fluid per day! Even if she is able to consume all her calories orally we will not be able to take the tube out until she is drinking enough to stay well hydrated. This is almost more critical than the food since dehydration is more subtle and quicker than malnutrition.

In case I have confused you too much, all of the above is great news! I remember that we were never sure that she would ever eat more than pureed food, let alone realistically have the tube-less life in sight!

On a personal level I am kind of freaking out inside! In one way, many of my back-ups are falling away. The nurses were able to catch any sickness symptoms I might miss, the fewer bolus feeds allowed me to add one in if we didn't have time to eat, Emma's speech therapist was here to encourage me and hold me accountable for progressing the eating.

Additionally, the dietician has simply given me the total volumes of water and formula that Emma needs to get each day and is leaving the distribution up to me! I'm already shaking with the pressure I feel to get it right so Emma can keep progressing. I so desperately want her to live without these concerns, so what if I get it wrong?

I really don't have time to sit back and obsess about the potential problems though! Instead I will start working on a schedule for Scott and I to follow gradually. And then I will chase Toby around as he tries to take every thing Emma picks up or eat any shoes/doormats/electronics he can lay his hands on!

That's right, Toby is getting better each day. He still has a chunky cough, not helped by the primary diet of milk, but he is otherwise a bundle of energy and, well, trouble! After last weeks scary trip to the ER I couldn't be more thankful.

Daddy's home...

And silliness reigns!!

I see wrestling in our future!!

Don't ask

Me: Do you love me?

Emma: No. I love Daddy, Mummy.

I choose not to believe her!!

Quote of the Day

"What's Toby doing?" (Called in from the kitchen where I was getting lunch ready)

Here it is, said with more than a hint of resignation...

"Him eating my princess book."

Emma is such a great big sister/mummy! When Toby first started playing with things I used it to teach Emma how to share. Everything was to be shared, which often meant everything Emma touched, since that is what Toby wants to play with.

However, after seeing Emma playing around kids she doesn't know, who will snatch toys without hesitation, I have changed my focus. In an effort to encourage Emma to speak up I leave them to it for a little while.

After hearing "is mine Tony" a few times I will step in and distract Toby or pull him off. I let him know that Emma is playing with it for now and give him something else. Emma seems to appreciate the help, but when she discards said toy shortly after (grrr) I tell her that if she's done with it she should let Toby play with it.

I'm not sure if I'm over-thinking the whole thing, but I want to make sure Emma feels confident enough to say "no" when she needs to. With all the medical things we had to do Emma learned to be agreeable, which was helpful with all the feeds, exams etc.

However, it's tough to know how she feels about things when you can't read her face. With us she will say "stop" or "no." When we ask her to do something and she says "no" we try and respect that. It also goes for not giving hugs or kisses to people when they say goodbye and even eating (when she's eaten enough for me!).

Most kids will pull a face when someone they don't know well or like gets in their personal space. Emma may do that too, but it doesn't show, so all we can read are small body language cues. For example she loves to be tickled by people she knows well. If she is not comfortable, she won't laugh, or even flinch!

I am very thankful she is already so verbal (really, I am!!) because I hope she will talk to me about things that trouble her, and speak up when she is not happy. I'll just have to endure the 50 questions on every car ride!

The mouths of babes

This morning, as I helped Emma get dressed in her room she picked up her yellow duck. "My duck's so cute." "Yes he is" I replied.

And then the dagger that pierced my heart...

"He needs his Dad."

Scott's been working so much lately, doing everything he can to provide for us while the work is there. He's found it hard to miss the kids so much, often coming home right before or after bedtime.

Emma says she misses "Daddy" all the time, but it's often after I've just said "no" or told her to do something so I don't really hear it. Knowing how kids project their feelings and experience onto their toys I couldn't miss the point here.

Since today Scott was working in Delaware I didn't think it fair to tell him what she said when he couldn't see her, but when he asked me to bring them down to visit I couldn't turn him down!

Finding balance in life can be tough, but

Letting Go

I think it's Stockholm Syndrome where an abductee sympathizes with their kidnapper. In a similar (stay with me!) way I am having a hard time letting go of the CPAP machine!! The similarity comes from the fact that Emma's sleep disorder, and associated precautions have held us captive for a long time.

Almost three years old, Emma has rarely napped anywhere but home and has stayed anywhere overnight without full machines on a very rare occasion, and only with one of us. When I look back to the early days, if I was going to be driving for more than 15 minutes I would take the pulse-ox with me!!

More recently we relaxed a lot, allowing her to nap without the CPAP, and even the odd night without it. There has been a notable difference in her sleep, especially the lack of snoring and much less sweating, even without the CPAP.

Last night I suggested we don't tell the nurses about the news right away, as I wanted to keep her on the CPAP while she is is congested. (A trip to the doctors confirmed she does NOT have an ear infection, probably just a mild respiratory infection.)

Scott did not agree, and we did tell the nurse she could leave her off the CPAP. I added the suggestion that she could put it on if her SATS dropped too low!!

Apparently she did very well despite the congestion and woke up alert and rested.

Still, I needed more information than we got yesterday, so I emailed her doctor for more specifics on what has changed in her diagnosis. It's a fair question as I regularly have to list her medical conditions!

Here's what he wrote back:
The diagnosis of obstructive sleep apnea is based on something called the “apnea-hypopnea index” or AHI, which is how many times an hour air flow through the nose and mouth cease or decrease by 50%. For adults, an AHI <>

Emma’s sleep study had an AHI of 1.6, which is “borderline mildly abnormal”; in the past her AHI was much higher and only got down to the AHI of this study when she used CPAP. Her oxygen saturations and exhaled carbon dioxide levels remained normal throughout the whole study. Thus, her OSA is MUCH improved and practically gone (or only boderline mildly abornormal) and CPAP probably wouldn’t improve it much when she is well. But, since everyone has more OSA when they are sick (just think about how you sleep when you have nasal congestion...), Emma’s AHI/OSA will probably worsen when she is sick so she will probably benefit from CPAP when she is sick.

Therefore, I can relax that she is greatly improved (I love stats!) and if we feel it's tough for her we can put the CPAP on. Interestingly in the past it is when she needs it most that we have had the greatest difficulty keeping it on her!! So she's been coping well for some time!

We pondered the loss of the nurses last night. On one hand we will have the freedom to come home whenever, wear what we want around the house, and go to bed early if we need to! On the other hand, we take great comfort in knowing our kids (they sometimes check on Toby for me!) are being cared for round the clock.

I can't imagine how it will be for Dorothy if she has to leave. Emma was Dorothy's first patient in pediatrics and she has been with her 4+ nights a week for over 18 months! We would like to keep in touch and maybe Dorothy's 8 year old daughter can finally meet the little girl she helps pick gifts for! (Maybe she'll babysit!!)

Toby's doing better today. He's eating more and sleeping better on his regular schedule. Today has been a constant rotation of wiping Toby's nose, then Emma's, and of course mine too now!

Quote of the Day

"You're my princess Mummy." Accompanied by a hug.

My day just got better.

Changing Times

Our lives changed today. With one email almost everything changed.

We can pack away the CPAP machine, put it in the closet with the suction machine we hardly use. For now we will keep it, and still put Emma on the Pulse Ox when she sleeps - for now. The insurance company will likely want to drop the nursing care, and maybe the machine rental. Until then we'll keep it going.

Emma still has a continuous feed over 7 hours at night. 520ml of formula is pumped in through her g-tube at a rate of 75ml per hour. The nurses monitor this, disconnect it when it finishes and also vent her belly gases during the night. Without them this would fall to me again.

On Wednesday we will see Emma's GI doctor and dietician. I will discuss the plan for weaning her off the tube altogether, or at least so she won't need the pump overnight.

Emma's feeding therapist is confident she will be off the tube soon if her progress continues as it has. She'll eat whatever you give her if it's cut up right!

None of this has sunk in yet. The full impact may not be felt until we go away somewhere and don't have to cart a bunch of machines!!

In a different focus we learned today that the recent storm did more damage to our house than we thought. Not only are the shutters banged up, the awning was hit hard, the window capping trashed, gutters wrecked and the roof looks like a machine gun sprayed it!

This could be one of those blessings in disguise though! We wanted new shutters and awning, the gutter at the back was falling off and the roof is not new!! We just have to wait for an insurance adjustor to approve the claim, and we could get our wishlist met for 10% of what it would cost out of pocket.

What's funny though, the only shutters that weren't damaged were on Emma's window - where we were during the storm!

The results are in...

Here's what the email said:

Her study looks good. Dr R. reviewed it. You can take her off at night! We plan to keep it in the house through the winter so we can see how she does with colds, and make sure her weight/growth doesn't plateau. Cool with you?

Uh, yeah!! This is great news. I'm not sure how this impacts the nursing care, but we'll figure it out.

Praise God! Again PRAISE GOD!!! Our baby girl just gets healthier and healthier and we can not be more thankful.

Safety first

Baby gates are supposed to keep kids safe - when they are closed!

Last night Emma played her usual game with Scott, of swinging the gate open and letting it hit the cupboards! I have not seen this before and wasn't paying attention until it went bad.

Emma had pushed the gate open from the closed position, not realizing Toby was crawling toward it. You guessed it, the gate swung right into his head!

Emma was very sorry and hugged him with an apology. She's great when he doesn't feel good, praying for him and reassuring him - "it's ok Tony, I'm here!"

Toby's doing well today. He's breathing heavily but is otherwise himself. That includes getting up at 5.30am despite little sleep, and playing non-stop.

We're going to the doctors later to make sure Emma is not showing signs. She has had the vaccines though and is older.

Keep us in your prayers please!!

Toby

Toby woke up about midnight with significant respiratory distress. His ribs. Were retracting with each breath and he was wheezing.

We called our doctor who told us to take him to the nearest ER - not even go to CHOP!

Once there he was given a nebulizer treatment and a chest X-ray. There was definitely something in his lung and the doc put it down to early pneumonia.

He's already on the antibiotic for the ear infection (she confirmed that too) so we just have to give the regular breathing treatments.

The hardest part was keeping him contained since he was in good spirits and too active to sit still.

We're home now and he's sleeping. Emma's nurse is going to keep an eye on him for me!!!

This is toby, in the ER at 2am! I'll explain later.

It was a difficult decision to cancel Emma's ENT appointment tomorrow. However when both Emma and Toby presented with runny noses on Tuesday I knew it would not be good. All the people I could ask to watch Toby during the appointment are busy, and Scott can't miss work. Taking Toby is hard enough, now that he is constantly moving, but a sick Toby - no way! Then there's the matter of the hearing tests - Emma is not so patient when she doesn't feel good.

Then last night they were both pulling at their ears and I figured they must have ear infections. I called our doctor and got antibiotics for Toby, but we're going to give Emma a chance to fight it herself.

As for missing the appointment, rescheduled for September, I'm not worried. Emma's speech has made incredible improvements and I would not want the surgery until the fall so that she can still go in the pool.

Speaking of which, on Sunday we all went swimming and after taking Emma out of the water to dry off I tripped and stumbled with her in my arms. I hit my knees on the deck, but that was forgotten when I saw blood coming from Emma's mouth!

She must've hit her face on my shoulder when I fell (but didn't drop her!) and she split her lip, which bled disproportionately to the size of the cut! She's had a bit of a fat bottom lip this week but no more than that. I'm getting over the guilt!

Other than that we had a great weekend. We all spent the day together on Saturday after the sleep study, we even all napped in the afternoon! Scott and I had a date in the evening, the first in a while.

With the past couple of days being rained out we haven't left the house. In fact I keep thinking it's cold outside because it's so gray, but hot and humid is the reality. There has been a lot of thunder and I have to say it makes me so nervous after the recent storm. With so many trees missing from people's yards it looks like the deforestation in the rainforest (well, almost!). A grim reminder of nature's strength and unpredictability.

Today Emma stood on one leg for the first time. I'm not sure why but I did not think she would be able to do that. Maybe it is because she can't jump (literally - not just play basketball!) or because she's been wobbly for so long. It was very exciting!

I hope the kids feel better soon. Emma has the dentist and two hospital appointments next week!!

Hair today!

Being cheap is not the main reason I trim Emma's fringe myself, but it's such a short job the effort of going to a salon seems too much. Keeping Toby busy is an issue because someone has to hold Emma's head straight as she still has a slight tilt. I learned my lesson though last night!

I try to keep Emma's fringe long for a more contemporary look, not like this scary do I had as a kid...

Maybe it was the fashion then!!

That wasn't the worst though - this was:

There's no comment for this!!

I have to say though as a baby it was a bit of a mess...

Now she (me!) looks like trouble!!!

However I ventured a little shorter than normal for longevity. Not being a trained hairdresser I can admit it's not entirely as easy as it looks, especially not at 9pm while your child is sat on your husbands lap, in the bathroom right before a late bath! Coupled with the poor kid not being able to close her eyes away from the falling hair - you get the picture.

Anyhow, this morning I did a few touch-ups, and if she has her hair in pigtails or little knots it looks pretty cool!

I will start to take her to the hairdresser next time. Now I just have to figure out what to do with Toby while Emma gets trimmed!

Yesterday I caught up on downloading all our photos and videos onto CDs. As I watched some from January I realized how far Emma's language has come. "Eh" was still her favorite expression just a few months ago.

By comparison, when I gave her some bratwurst last night she asked what it was and I said "hotdog." she replied with "It's not hotdog, it's sausage!" I guess she had been listening when I said that earlier. Whatever, she enjoyed eating it!

The other day I pointed out to Scott "she's getting so big." Emma, who was walking away from me, turned around, put her hands up and said "I'm not big Mummy, I's small" and gestured like you would if you caught a small fish!!

She also told Scott to "Relax Daddy!" as he tried to hurry her to get her shoes on!

Sleep Study #3

Scott, Emma and I headed to the hospital around 6pm last night, while Toby stayed home for some quality time with Nanna.

We told her we were going to sleep at the hospital and they would be putting cool colored wires in her hair and she'd get a cool hat! And the piece du resistance - Daddy would be sleeping in the room with her all night!

Since Emma had taken a half hour nap during dinner, she was raring to go when we got downtown. Scott dropped us at the entrance and went to park the car. Emma ran the whole way to the sleep lab, which I was fine with since it wasn't busy and she had energy to burn.

We were shown to our room and told to go get something to eat until about 8pm. We went to McDonalds (by far the worst in the world) and got Emma some nuggets since she missed dinner. She was thrilled and we took them back to the room.

Once she had her food and the Dora DVD started Emma was relaxing...


We were repeatedly told not to read anything into it if they did not put her on the CPAP during the night, or if they did. We nodded politely - we're not new!!!

They came in much later than they should to get her ready, citing her eating as the reason for the delay! 9pm is too late to start the process and we would have taken it away if we'd known.

Anyway, two people came in and started pasting about 15 probes to her scalp and 5 to her body. Emma did great cooperating, and she played with my phone during the process. Once that was done she got her "cool hat"...

The extra bandages tipped her over the edge though...

And with the probe in her nose she finally lost it and started crying. Daddy was told he could lay on the bed with her for comfort, so he did.
We cut the lights shortly before ten and we sang to her to get her to sleep. Every time we stopped she would excitedly whisper "again!" Once she was quiet and facing Scott I snuck out the door and headed home.

Scott called at 6.15am as they had woken her up to get her cleaned up before 7am and she was freaking out - duh! Waking a sleeping toddler - hello!!

Toby and I jumped in the car and met them at McDonalds, before we all headed home. This is Emma with her pasty hair and cookie stained teeth...
We won't get the results right away, but the technician gave Scott a thumbs-up and said "we did good." That's the best report we've had of the three studies. Quietly optimistic.

(I forgot my camera - doesn't the phone take great pics?!!)

Linvilla

On July 1 we made our first trip to Linvilla Orchards. They have lots of pick-your-own produce and other goodies, but we just went to see the farm animals and playground.

Lots of people from our area take their kids, but I had not known what to expect and thus not gone. Since Ellen and Kimberly were taking Josiah, 3 on 3 seemed like a good ratio of kids and adults!

This was also the first time I took Emma to see animals because she was still pretty scared of them last year. It seemed like a good bridge between pets and a zoo!

With Kimberly

Emma enjoyed it and was not worried when the black calf (relatively the size of an elephant to her) came right up to the fence. Of course I made sure she couldn't touch any animals! There was a baby pot-bellied pig that was super cute!

We also saw a sheep, horses, goats, emu, ducks and geese. In the picture you can see there were plenty of chickens and roosters. Emma pointed out "It's so loud" when the rooster crowed right by her.

Then it was on to the playground. My camera batteries ran out so I could only get a few shots of Emma and cousin Josiah playing with Kimberly, while Ellen and I took turns amusing Toby in the shade.


It was alot of fun, and when the weather cools down a bit I think we'll go back.

Uh-oh

This is Emma sleeping through dinner because we weren't supposed to let her nap! Not good.

Coincidence?

Emma ate a cheeseburger (bun and all) and fries from McDonalds today (see picture sent from my phone). This is the first time.

As I pondered over this new accomplishment I was reminded that she has enjoyed the taste of fries for some time, only she would just suck them or eat cut-up pieces. Today though she bit them and then ate.

Then I remembered the first time we let her have a french fry...
http://ehmnews.blogspot.com/2008/12/home-again.html

I'd be impressed if you remembered this! It was the last day of a hospital stay in December 2008, shortly after we were given Emma's CPAP machine.

I'm hoping that today is shortly before they take it away!! (They won't - we own it, but you get my point!)

First cheeseburger!

Catch-up

I have more photos and videos than I thought!! Here are a few...

Toby being cute and mischievous - a bad combination [for us]!

Scott catching a few minute with the kids between work and mowing the lawn!

Emma playing her game (the crazy hair is because it's usually in braids!)

Emma likes to dress herself - shirts or dresses all end up round her waist!

A rare moment of harmony (courtesy of the TV!)

Hot hot hot

It's surprising how little energy I have to write this week! The heat has been incredible, however we have still been out and about. I'd say you can assume no news is good news, but after the power outage in June you just never know!!

On Tuesday morning we went bowling with friends, only to find the air-conditioning at the lanes was broken! We stayed for an hour anyway as it wasn't too bad, that meant we got 4 frames in for 4 kids! It got a little too warm and we bailed out!

I'm learning to compromise on our schedule little by little. If Emma is not home and eating lunch by noon she won't eat enough (my judgment on enough!) before nap time at 1pm. She's also been napping for 3 hours, so she won't sleep until close to 10pm, to be up between 6-7am!

Since we were bowling late I picked up chicken nuggets on the way and fed them to her through the game! It allowed us to go when I would have normally said no. I'm also ending naptime at 3pm to try and induce earlier sleep at bedtime. It hasn't worked so far!!

Tuesday we went to the Thompsons pool around 3.30, and even asked Melissa to do therapy there! We got out to come home around 6pm and were all roasting again before we go in the car!!

Yesterday we went at 6pm and came home around 9pm. It was a little late for Emma who played hard in the water and cried the whole way home! But the water was warm and the company was great so we found it hard to leave.

Scott's been working like a machine, even after finishing a day of 8 hours in the blistering heat. We haven't seen him much except for Sunday and last night. I'm glad he's able to take this weekend off and be with us. I hope our kids know how hard there Daddy works for them!! (Don't worry, I'll tell them!!)

Today we hit the supermarket before Emma's speech/feeding therapy. I'd planned to give her ravioli, but she saw the box of leftover pizza I had out for my lunch and asked for that. Skeptically I agreed and both Brooke and I were pleasantly surprised as she ate the small pieces like she'd been eating pizza for years! No pulling the topping off to eat - down in one!

Followed by some watermelon, no less! Emma loves her fruit, which is great as I have never been a big fruit or veggie fan. I even got her a kiwi and avocado to try! The latter being a great high-calorie food.

I'm not sure if we can expect the heat to really ease off until September, so we'd better get used to this way of living and dodging the heat. I'm going to try some of the used sales around here for new toys for the kids, keep them amused in the air-conditioning!!

I will confess that I've been too lazy/busy to download the pictures/videos I've taken, but will do that soon!!

Tomorrow night is Emma's sleep study. We should get some idea of the results early next week, so I'll keep you posted.

Movie star

In July of last year I believe we didn't see higher than 90f. Today it was 80f at 6am!! This week is the 4th heatwave of the summer (3+ days over 90f) and 100f+ is forecast for today.

What do you do with kids in these circumstances? As soon as the sun hits you it feels like you are on a BBQ! Today I had to go and run some errands and made an effort to go earlier and avoid the increasing heat.

From the air-conditioning in the house, to the car, to the stores, the exposure to this nasty heat would be minimal!

When I told Emma we were going out she asked to see her friends! It's been so crazy lately and aside from church we have not been able to get together with her friends. I felt bad and called Christina to see if Emma could hang out with the boys for a while

Christina and another friend with two kids Emma loves were heading to the movies - $1 for kids to see Madagascar. I knew I couldn't take Toby, he's far too restless, but Christina offered to take Emma with her too!

I drove to the movie theater to meet our friends, and dropped Emma off with a bag of her supplies (diapers, drink, crackers and g-tube!) and a cardigan in case it was cold inside! She was thrilled to see her friends and waved me off as usual.

Toby and I ran our errands and headed back to get her 2 hours later, just as they were leaving.

And Christina said she was great the whole time, even sshhing Aaron when he called her name! she did freak out toward the end when Christina had moved seats from behind her and Emma didn't see her when she turned around!

My baby girl went to the movies for the first time without her Mummy - she's getting so big!! Maybe I can go with her one time.

All talk

I mentioned the improvement in Emma's eating. The other side of the story is in her speech. Once little more than an inflected "Eh" Emma now has a vocabulary and verbal ability to rival all her peers!

Emma is at that stage where she gives a running commentary on everything. 99% of the time it is incredibly endearing if not hilarious. The other 1% are also endearing/funny but they are badly timed! Some of the phrases are worth recording for laughs.

"Let's go Mummy/Daddy!" Cute, for sure. Also useful when she says it if you're stuck in a long conversation! Not so good repeated over and over in the line at the driver license place!

"Jesus, help Tony feel/sleep better. Amen" We introduced this when Toby was sick as she seemed concerned about all the time he was taking up! It now applies when ever he cries!

"Are you alright guys?" "Alright" seems to be more of a British term for "ok?", so I know she got this from me. She also says "all set" for "ready"!

"I said [...] Mummy." This one usually comes after she says "hi" to someone at the store.

"What's that?" Innocent question, except when it is said as she points directly at a person!! Would that make you paranoid?

"He not listening." When Toby or Scott is ignoring what I'm saying!!

"It not my turn yet." If Emma does not want to do something, it's not her turn yet!

"It not nice Tony, it naughty." Poor Toby doesn't have to do much to get this reprimand.

"Go fast Mummy." Used when stuck in traffic or taking a walk, in neither case is Mummy going any faster!!

It may come as no surprise that her speech therapist says she is not worried about Emma's speech at all. Her pronunciation of the b's and p's will likely come with time as she learns to adapt. It's just as well since Brooke, her therapist is moving to Las Vegas in 6 weeks! We're bummed.

There doesn't seem much point in bringing in someone new for the few months until she turns 3 and her services change completely. That's right, Emma turns 3 in 4 months - where does the time go?

Nature

One of the ways wild animals overcome their prey is through sheer endurance, chasing them until they have no energy left to run or fight. And that's exactly what Toby did this morning!

We have 3 big baskets of toys in the living room. One is Toby's and lives under the TV in a cubby, the others are Emma's and they live across the room under a table. each morning I get Toby's basket out, scatter some of the toys to amuse him. Emma usually plays with them too, resorting to her toys occasionally.

This morning after the kids played together Emma went to get her Backpack (from Dora). "She's so cute, Mummy!" I help her open the hard purple backpack and she takes it to the ottoman to empty.

Smelling fresh forbidden toys Toby also prowls around the ottoman - I'm not kidding, he crawls so slow and steady surveying the scene it's like watching a lion! As he makes a grab for Backpack Emma pulls away "No Tony, is my Backpack."

Emma takes the toy to the recliner, Toby follows. She moves again, to the sofa, he follows.

And it is here that Emma abandons all hope of playing alone, and leaves Backpack for Toby to come in and devour! I see things getting interesting as they get older!!

Feed me

It's been a while since I gave any detail on Emma's progress with eating. I know because I get asked that question most! I liken it to growing one's hair - you don't realize how much it's grown because you see the gradual change.

A couple of days ago as I wiped Toby down after breakfast (fist goes in mouth and spreads food over face!) and then cleared Emma's tray and let her down that I realized how far we have come.

In November when we earnestly began feeding Emma 1-3 times a day it could get pretty messy. She would accept about 6 small spoonfuls of stage 2 baby food. Even then it might be coughed up or pushed out.

There've been some big milestones along the way. The first whole veggies, the first shared lunch etc. Last night was one more - we went out to a Chinese restaurant for dinner and ordered an entree for Emma! There was no kids menu, so we got sweet and sour chicken for her. She loved it, but not as much as the fried noodle chips and duck sauce she chomped on beforehand!! (I brought food for Toby which he ate between chewing on the table cloth and flirting with the waitress!)

Then you look at today's menu as an example of how far we've come. For breakfast she had a toasted frozen waffle with syrup, and some canned mandarin oranges, the new favorite. At the store she wanted cheese from the deli, but they weren't cutting it fresh so I gave her a Ritz cracker.

Then for lunch I gave her some deli ham and sliced cheese. She also ate some of the chicken left over from last night, and some chunks of real banana.

She has recently developed a love of the classic hot dog, which she handles well with the skin pulled off.

I don't remember much of the journey that we came on to get here, but I know it was long and bumpy at times. I also know there were many times I thought we'd stalled out and would go no further. I'm ashamed to say I really never thought I'd see this place, where Emma and I can share a box of chicken nuggets - that's right, I said share! I am so proud of my little girl I will even share my food with her!

It's now a matter of time for Emma to gain strength and skill with the food she eats. I think it is much more effort for her to eat than the rest of us. With the low muscle tone I imagine it is like eating when you are really tired.

Next week's sleep study will tell us if the progress with eating and talking has helped the obstructive sleep apnea enough that she can do without the CPAP. If she can I will look for an option to lose the night feeding too and she can sleep without intervention.

All things are possible.