Tough week (already)

On Monday we got a new pulse-ox machine to monitor Emma's oxygen level and heart rate when she sleeps. Right off the bat it was alarming us that she was desating, which was odd because prior to that she rarely had any desats. According to the equipment company, the new machine is more sensitive, so perhaps she's been having desats that weren't picked up.

That night she was really congested and we actually had to suction her (first time in ages). I'm not sure if it's a cold, allergies or maybe teething? She had a pretty restless night though, and wanted to get up at 6.30am. I brought her in with Scott and I but she didn't stay sleepy for long.

I was exhausted and Emma was a little fussy so Mr. TV played babysitter for most of the morning, before I tried to get her to take an early nap with me - no luck!! As it was she stayed true to her normal schedule and didn't nap until noon. Poor thing - both her eyes and nose were dripping all day!! I hoped I might also get a nap today...

Of course that never actually happened! Scott popped in for some lunch and we got into a big conversation. (We have started to screen our conversations so that we don't disagree or discuss worries in front of Emma - it seems to affect her right away.)We don't really fight, thankfully. When there is a difference of opinion we give each other time to air them both before we try to reach a compromise, but my tone of voice can be a bit harsh sometimes!! )

At the moment we are working together, in faith, through some worries. As you may recall, Scott was laid off in May and is still not back in regular union work. Thanks to small jobs here and there so far we've been okay, but with only one income it makes things a little unpredictable. I am also one who does not like any form of uncertainty!! All this would be enough but we are also expecting a new baby in September!!

There are extreme steps we can take if it comes to it (short of selling everything!!) like me finding some work, though my earning power is way less and I have about 6 weeks before I'll be too busy! Rather than panic and make major changes we might regret, we are waiting on God to see where he is leading us. It is important during this time that we maintain excellent communication, both in our worries and needs, but also in our support and encouragement for one another - we learned that when we were in the NICU.

In the meantime Scott has been blessed to be able to put in some good hours on the church renovation - I say blessed because his heart is to use his skills to serve God in the most practical of ways. I'm so proud of how gifted he is, but also that he has incredible integrity and values. Some things are just more valuable than money.

More than once I have looked heavenward and asked why now! I don't have any specific answers but I do get the sense of "why not?"! After all it is only through trials that we learn our strength (in faith) and develop greater patience and perseverance.

We are thankful for the sermon we heard on Sunday, by a guest Pastor. He spoke about fear and the need to stand on god's promises and not allow fear to cripple you. So far I'm doing pretty good - my words are lining up with my actions. When I do get overwhelmed, as I did today, it's important to get it off my chest. That is why faith needs to be renewed daily - the stresses of life can wear it down!

Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. (2 Corinthians 4: 16-17)

For the rest of the week I'll be aiming for more sleep, and praying for peace to enjoy the next few weeks!!

Stay tuned for details of our visit to Orthopedics on Thursday!!

Day at the beach

On Saturday we decided to take advantage of the great weather we get here all summer (sorry, had to rub it in for the guys in the UK!!) and headed to the beach for a day. The drive is about an hour and 30 minutes, not bad for a day trip, even with traffic.

On the way Emma was playing with one of her favorite car toys - my road map!!

At the beach we set up the tent and instantly relaxed. I think beaches are like airplanes, in that you don't have to be in one for long before you lose all sense of time!! A day on the beach can feel like a vacation. The weather was a balmy 8o degrees, with a cool sea breeze, and the water was about 70 degrees. It was so clear I even saw some fish in the shallows!

Emma was not so steady on the dry sand, but she was able to walk on the wet sand. She held on to Kimberly and my hands though at first, the water was intimidating!! That said, when she got hit with a wave in Daddy's arms she just laughed!!




You can't go a whole day without a nap, and Emma slept for about an hour, which gave us time to eat our lunch!

On the way home, about 4pm Emma was visibly tired so I put on the lullaby CD. It worked on Kimberly, me and almost Scott, but Emma was up the entire drive!!

It's so great to live within a daytrip distance of great beaches. In the UK the nice beaches are not far from my grandparents house, but the weather is often a deterrent from making a trip!!

Interesting

Success Is Living Your Values

by Rick Warren

“We should choose to follow what is right. But first of all we must define among ourselves what is good” (Job 34:4 LB).

Everything you do is influenced by your values. Your actions in life are largely determined by the values you hold. Every time you make a decision, you’re relying on your values to tell you what to do.

Unfortunately, some of the values you operate by are counterproductive to your success and a hindrance to your satisfaction in life. You see, many of the unconscious values you live by are ones you didn’t choose; they were imposed on you by parents, peers, and the culture around you. (Today television is the #1 values shaper in our society.) You may be operating on incorrect information and values that don’t stand up under pressure.

Just like the set of the sail determines the direction of a sailboat, your values chart the course for your life. The question is: In what direction are your values leading you? Are they going to deliver what you hope or will you eventually be disappointed?

Here’s another fact about values: they cause a lot of your stress! Stress occurs when what you say you believe and what you actually do don’t line up. For instance:

• When you say, “My family is important to me,” but you’re always too busy or too tired to enjoy them.
• When you say, “I value my health,” but you overwork, overeat, and never exercise.
• When you say, “I’m not materialistic,” but you become so in debt you must worry constantly about finances.

When two of your values conflict, that’s called a dilemma. My experience is that these incongruent values are the #1 cause of emotional tension among believers. What’s the solution?

Identify what is really important in life. “We can choose the sounds we want to listen to; we can choose the taste we want in food, and we should choose to follow what is right. But first of all we must define among ourselves what is good” (Job 34:3–4 LB).

You need to come up with a personal definition of success, not someone else’s definition but your own. Remember this: “Success is the feeling I get when I live out my values.” It’s not a destination. You can be successful at any stage of your life, based on your own personal values and goals. Begin by making a list of what you value most in life. Ask yourself “What is going to last?”

Begin eliminating those things that really aren’t important. “Don’t copy the behavior and customs of this world, but let God transform you into a new person by changing the way you think. Then you will learn to know God’s will for you, which is good and pleasing and perfect” (Romans 12:2 NLT).
_______________________

I posted this devo for you to read because it was enlightening to me and hopefully to you to. You see I get stressed like everyone else, but not at all the times you might expect. For example, when Emma was born I don't think I was really stressed. I said I was believing God for everything, and I was. And there have been many other times when I have not been stressed when it would have been understandable, so I guess my beliefs and actions were lining up then too!

Now, when it comes to money I am inconsistent! At times I say that I am believing God for provision/guidance etc, and I do not worry. And then there are the times when I say it, (and believe it!) but I still worry, obsess, fear etc. I now understand that I may be fooling myself and others by what I say, but it's not real and I'm not fooling God. Perhaps that's why he has to keep repeating the same lessons with me!!

So, what I have learned is that if I say I'm going to trust God, but I'm still worrying, then I'm not really trusting him. Why does that matter? If I'm not really trusting God, then I'm trying to work out a solution for myself (and I'm not that creative!). I may miss the things that God has for me. And above all else in being stressed I lose my joy.

Do not grieve, for the joy of the LORD is your strength. (Nehemiah 8:10b)

Guidance

Legacy to the Next Generation: Correction
by Rick Warren

“Discipline your children while they are young enough to learn. If you don’t, you are helping them destroy themselves” (Proverbs 19:18 TEV)


The gift of your correction: A fourth factor in leaving a great legacy includes offering correction when your children make mistakes. This responsibility of parenting often causes major disagreements in marriage, because no two people see everything alike. In any moment, one spouse will likely be a tougher disciplinarian than the other.

Sometimes it depends on the circumstances, sometimes it depends on which child it is, sometimes it depends which spouse has been offended most. But you must not allow your disagreement to become ambivalence or your children will rule the roost, and that makes them feel insecure.

Kay and I have often disagreed about this. When we do, we’ve learned to step aside privately, work out our disagreement, and decide which one of us is best prepared emotionally to handle the situation. Then we present a united front to the kids.

Whenever we’ve failed to follow this simple rule, it has hurt everyone.

The two most important corrective words you must teach your children early in life are “come” and “no.” Kids who never learn to respect and respond to authority will struggle their entire lives. Nobody gets their way all the time. If you don’t set clear limits for your children now, they’ll never understand the concept later in life, and they will have great difficulty in relationships—in their own families, with co-workers, and even with God.

Solomon wrote, “Discipline your children while they are young enough to learn. If you don’t, you are helping them destroy themselves” (Proverbs 19:18 TEV). Nothing destroys a legacy like a lack of discipline.

Will you have any influence on the next generation? When you die, your legacy should be far more than just what you did on Earth. Your legacy should include what others do after you’re gone.

_________________________

After reading this I felt good about our discipline so far! Emma understands "no" and for about 90% of the time she listens very well, even responding to signs. As far as "come", we're working on that!

This week we've been using time-out on a more consistent level. I give her 3 chances to do what she's told, by counting out loud 1, 2, 3. If she doesn't conform after the 3, she is sat in the corner of the dining room where she can't see much, but I can see if she moves around. She has picked it up really quick and I'm pleased to say I recognize the fake crying!!

It begins...

I have to say that I have been very good about not buying stuff for the new baby. There are probably a few reasons, self-control probably the least of them!!

For one, we have tons of baby stuff that we got for Emma, and it was intentionally gender neutral so we wouldn't have to buy duplicates for a boy! Of the few things we will need, I'm simply going to wait until we need them.

As for clothing, we just don't know how big baby #2 will be, as Emma was small and the odds are stacked against another small baby! Plus you can never be 100% sure of gender, unless you have an amniocentesis like we did with Emma.

The baby's room is not ready yet. We cleaned the area rug, but the walls need to be primed and painted before we get any new furniture. We are intending to use Emma's crib also, once she transitions out of it and if that isn't soon, we have a bassinet for the first couple months.

All that said, today I bought some sleep suits (in the UK we call them baby-grows) and some nightgowns. I guess I must be pretty sure deep down it is a boy as they are boy colors and it didn't occur to me before I threw the packaging away! I was focusing on size - I bought 0-3 months, which is supposed to be 8-12lbs. I don't see him being any smaller than that! That will probably be it until he arrives and we know what size to get.

I also started reading up on breastfeeding. Despite pumping for 16 months the real nursing sounds pretty complicated and I'm nervous about it!! I also know that b/f with an older child around makes it a lot tougher to stick with it, so I'm really going to need support and determination. I have already thought that if b/f is not practical I would try pumping again as it is likely quicker and I can do it on my schedule.

I'm sure the nerves will come and go in the next few weeks, as will the excitement, fears, plans and questions. Fun, fun, fun!!

The eyes have it

The opthamology department that is. What? the title of my least favorite department of all the ones we have experienced!! It starts in the waiting room, which is way too small for all the kids they have waiting at one time. It is also very cramped, so for the few people with strollers it is hard to get a seat with space for the stroller so you end up standing in the hallway.

Of course Emma wants to get out and play with the toys she sees the other kids with. I'm not in a place where I'm comfortable with that! Doctors and hospital waiting rooms are off limits for her until she doesn't lick her hands so frequently!!

Amazingly today we went in on time, however that has never been the case before so the wait, in such a bad waiting room, is another reason! It was also made easier by a visit from Christina and Nathan who had just finished a follow-up appointment after his surgery. (I'll update you on that below!)

The fellow (as in job-title, not decent chap!) who did the preliminary exam seemed nice. He had a woman with him but I don't recall him introducing her! Emma was very good seemingly more curious than bothered by the man shining lights in her eyes and moving her head around. She was also really fidgety which was a pain!

You may recall that this is the department with the highest tally of stupid comments, and it was added to today! The fellow commented that Emma's eyes were mostly straight (as opposed to crossed) and she moved them up and down well, but not left to right. HELLO???? No lateral eye movement/control is a key feature of Moebius, so he was either stating the obvious or actually surprised. My response was to say that she can't move them laterally.

On a non-stupid note he did say that her eyes look great and if you were to do surgery to correct strabismus (crossed-eyes, which is so prevalent in Moebius) her current control would be the best you would hope for and it shouldn't deteriorate. Yay, no eye surgery on the horizon!

Then we saw her eye doctor, who's first comment was "Are we smiling today?" As Christina pointed out to me later, Emma does have a smile that you recognize if you know her, but I don't think he knew that. So I just ignored it altogether. What possible way can you respond?

Anyway, she doesn't have to go back for 9 months unless we see any problems, but she is doing so well with her eyes I feel good.

Also today she had speech therapy and Brooke was very pleased with the new sounds she was using and her eating is progressing well. I think today was the first time I've really thought back on how she used to push all the food out right away and now very little is not swallowed.

At my midwife's appointment, also today, I got a good report on the baby. I had no concerns as the baby is constantly moving. This is quite new to me as Emma was less active. We have 7 weeks left until my due date and we are starting to plan how Emma will be taken care of when I am in labor and staying at the hospital. There's something to be said for scheduling a delivery, but I will not get induced unless there is no other choice!!


Back to Nathan: He had a pacemaker put in last Tuesday and after a slow start he recovered well and came home on Saturday. Since then I think it's been a challenge to keep him from hurting himself as he wants to run around with his 5 year old brother! There are quite a few restrictions that come with the pacemaker as magnets can reset it and electronics also pose a risk. All of these things must be kept 6" from the unit which is in his abdomen. Hopefully he'll get used to it as he gets older.

My Girl

Today we went to see Emma's pulmonologist for her 4 month check. Scott was able to come with us today, which is great because I don't have to relay the conversation and there are two of us to amuse Emma! It actually feels like family time more than just a dr appointment.

We started out in the new standard of screaming crying and turning flaming red when the poor nurse tries to get a weight and height check!! We did manage it and Emma is now 22lbs, and still 30 1/4" tall.

In the consultation room we hastily got her dressed so she would know there was nor more "messing" to be done! Then we put her down so she could walk around int he hallway (we were the last appointment of the day so the place was deserted.) Of course she quickly dropped to all fours (gasp) and then put her hand in her mouth (double gasp!). I grabbed her hands and had Scott sanitize them as quick as possible - hospital floors are just not sanitary!

We walked past the room where her doctor and a student were doing paperwork. Dr. R. was very pleased to see her walking and here her vocalizing - just as well because she turned into a mute limpet the second he walked in the consult room!!

This Dr has had 5/6 patients with Moebius, more than most other people, so we consider him her primary consultant. His main medical concern is Emma's airway (obviously) and in particular the obstruction when she sleeps. I asked him to give a psychic prediction (in those exact words!) on how long he felt she would need the CPAP. In my laymans words this is what he said:

Emma doesn't have the sleep apnea like most people, she really has an obstruction that is helped with the same treatment as "sleep apnea" and they are categorized together. He feels that she'll probably need it until early childhood, when if she is talking and eating well it may help reduce the obstruction to her breathing. At that point he would consider doing a sleep study to see if she has improved airway in sleep - but we don't want to do it too soon as a reduction in difficulty could mean we lose nursing!!

He also mentioned that removing her tonsils and adanoids (sp?) would reduce the obstruction if it was felt necessary at that point.

He also mentioned that we will likely be considering "cosmetic" surgery when she is 5/6, which could include a mandibular distraction (moving her small jaw forward, enlarging her airway) and dental work.

Since Dr. R. helped me to train Emma to sleep better I asked him what he thought would be best for transitioning her into a bed. The concern being around her getting up while she is hooked up to machines!!

He suggested that, well before the baby comes, putting a mattress on her floor and letting her sleep on it for nap etc, but not forcing it. We could either wait until she's asleep to hook her up, or put the CPAP and puls-ox on and hope she learns quickly that she should stay in bed!! I think we are going to give it a try since her sleep pattern has changed a bit since she started walking anyway.

The best part was that as she relaxed throughout the appointment she started to imitate the doctors posture and when he gave her a pen she started writing just like he was. It was hilarious. At one point she wanted to look closer at his ID badge and he commented on it not being a good picture. I said that he was keeping it though as it was taken 20 years ago and he looks younger! (It's okay, we have that kind of rapport with most of Emma's docs!) the student thought it hilarious and Scott pointed out hew probably couldn't say stuff like that!

As we were leaving we wondered if the doctor who delivered Emma might be around, and we saw him right away!! She acted all shy with him, but it was great to show him how well she is doing. We also saw the ultrasound technician who checked on Emma twice a week for the last two months of my pregnancy. They were both excited about our new baby too.

A good visit!

The Wall

It's a phrase I think I've heard mostly in the US - "hitting the wall", referring to the point in sport when the body becomes incredibly fatigued and loses energy. I think it applies well to pregnancy, and with just 7 weeks left to go, I have hit a wall of sorts!! A sleep pattern regularly interrupted by heartburn and thirst, plus bathroom trips contributes to the effects of having a very active person depleting the energy resources I have!!

Yesterday we had a rare Sunday with no plans after church, and with miserable weather we chilled out at home for the afternoon. We skyped my parents and Emma was showing off as usual. Tthis time Scott Picked Emma up like a dumbbell, it was pretty funny...

After a few hours I took a catnap on the sofa and every time Emma tried to wake me up (I kept my eyes firmly closed) I guess Scott was telling her to "sshhh" because when I did wake up she walked over to me, finger to her lips and said "ssssss"!!

Today I really struggled to get up and it was made easier my Emma who is in a cuddly mood today. She snuggled up in bed with me for a half hour before we got up for breakfast.

She kept herself pretty much amused this morning, pulling out books and photo albums. She's also mastering coordination with her little push bike...

We had a visit from her new clinical nursing manager, with the company that supplies her night nurses. When she went to listen to Emma's belly Emma reached for the stethascope, as usual. Kristen was amazed when Emma lifted her shirt and put it on her belly!!

Apparently Emma's confidence has grown greatly with her new walking skills. She will show-off for anyone at anytime, and that usually means they will happily read any book to her - so smart!!

This week we have two specialist appointments and 3 therapy sessions, while I also have a midwife's appointment. With two other specialist appointments this month, we are cramming in all the medical stuff we can before I get to far along.

Money, money, money!!

I received this devotional today:

Your Real Life Is Not About What You Own
by Rick Warren

“Your true life is not made up of the things you own, no matter how rich you may be” (Luke 12:15 TEV).

The Bible has a lot of great advice on money management. Over half of Jesus’ parables deal with handling material possessions. In fact, Jesus spoke more about money than He did about either heaven or hell.

There are two common myths about money:

Myth #1: Money is evil. Actually money is neither good nor bad. It’s neutral. What the Bible actually says is “The love of money is a root of all kinds of evil” (1 Timothy 6:10 NIV).

Here’s the point: we are to use things and love people. When we get that reversed we get ourselves into trouble. If we love things, we will end up using people. God says people are always more important than possessions.

» Read More

I've always had a love-hate relationship with money. I love the feeling of security it gives when you have it, but I hate the feeling of dependence on it that I sometimes feel. Since becoming a Christian, God has been working on this for me. Especially not seeking money for security, but trusting God for our security.

I knew that money itself was not evil - like most things in life it is our attitude towards it that is good or bad. Jesus explains why: "No servant can serve two masters. Either he will hate the one and love the other, or he will be devoted to the one and despise the other. You cannot serve both God and Money." Luke 16:13

How do you know if you are serving money instead of God? Your decisions in order to get or keep your money will contradict God's principles and morals, and distract you from his purpose for your life. It takes some real honesty to admit that you might not be living for the right master.

I feel that one of the keys to serving God, with your money is the tithing principle. If you realize that all provisions come from God, it makes sense that giving back to him in acknowledgement should come first. Tithing can sometimes be tough, especially if there does not appear to be enough left over. However it is in these circumstances that God delights in showing us the amazing ways he will provide. I remember once I even got an energy bill for $0.00!!!

Why am I mentioning all this? When Emma was born and I left my job for good we learned to trust God for our health, and for our finances. Since Scott has been out of work we have had to trust God more and more. It's not always easy, don't get me wrong, but I want to testify about God's grace and provision. We have made decisions that might not always make sense to people in the world, but we believe it is because we are honoring God with our lives that we have been able to even enjoy this time that would otherwise be stress-filled.

We don't know what the future holds, and with a new baby due in 7 weeks I'd really like to!! More importantly I wanted to share the hope and faith that has brought us through.

Get to know us!

I just found this CD with a bunch of photos of Scott on it. I had to share them, they make us laugh!!

What a cute baby!!! (This one cracks me up!)

See, he did have hair, once!

My first real taste of snow, out with Scott and Kimberly

Scott's first attempt at pancakes - they really were an inch thick!! You can see how much I managed to eat!

Visit

Last night Scott and I went to visit Nathan. He had a pacemaker put in on Tuesday and then developed a fever. He also had very cold feet, which they put down to constriction of the veins from the fever. he has also developed fluid on his lungs and was on oxygen until lat eint he day Wednesday.

We called to see if we could visit just before Christina planned to call us so Uncle Scott could come in for some comic relief. It seems the second surgery has a greater amount of pain in recovery and this 3 year old boy is understandably not very happy.

When we got there his heart rate and respitory rate suddenly improved from where it had been, even though he was sleeping! It didn't last long as he woke when the pain broke through the medication. I have decided that the worst sound a mother can hear is "owww, mommy" over and over. Christina is doing great though. It's not easy seeing your child in any pain, but short of anaesthesia, he's bound to feel something.

With some medication he soon fell back to sleep so we took Jeremy and Christina to McDonalds for a 'shake. We haven't had much chance to hang out lately so it was nice to have a laugh, even if it is the worst McDonalds in the world - I'm not even exaggerating!

Not overlooking the toll on the child, I think it is tough for most people to fully appreciate the mental toll on parents that being in the hospital with a child takes. It's really frustrating, especially when there is no definite timescale and a hospital becomes a timeless blackhole. And that's without the stress of a sick child! I hope we were able to alleviate that for a time.

On returning to his room we found Nathan awake and watching a movie. After a few minutes Scott had him smiling and talking. Scott put a medical glove on his head and blew it up! (You'll have to get Christina to put the video on her blog!) You can always count on Scott to get a laugh from a kid!

Somehow it got to 9.15pm before we left, and Emma was at home with Grandma Ellen. We barely walked in the door before Elizabeth, Emma's nurse walked in. She has never seen Emma in full glory, and boy was she having just got a second wind! Emma is quite different when she is up and awake, compared to sleeping in a crib where she looks like a little baby. Elizabeth was quite excited.

Of course I knew it would not be simple getting her to sleep all hyper, but we stuck to our routine (teeth brushed, diaper change, pajamas, eye gel and prayer, in that order!) and she went down quietly. It did take about 20 minutes for her to fall asleep and Elizabeth hung out with us until she was asleep.

Big girl

There is no doubt that Emma is becoming such a big girl. Just look at this picture from Saturday...
For all parents, it is bittersweet when your baby becomes a toddler. I guess that's why we have more kids!!

Here is Emma making us laugh during therapy on Tuesday. I wish I could capture all of the hilarious things Emma does, on purpose that leave us cracking up!!

(Prior to the video she had been sat like a grown-up, with her legs crossed without any one telling her too.)

Some relief

So the neurologist emailed me back and said that she didn't think it was CCD as Emma does not have any abnormality in her collarbone, which would be the primary sign. Phew!

That said, she is intrigued about why the fontanel is still open, although it could remain open and cause her no harm - the soft spot is not all that soft. However, the open fontanel and asymmetry of Emma's head could be indicators of a different craniosyntosis syndrome. She does not have enough information on all the possibilities so she suggested we follow-up with genetics who are able to make a call between unusual differences and actual abnormalities.

Emma first saw genetics as a newborn, but Dr. W. said that it can help to go back after a couple of years as new features may have developed that were not present before, and new discoveries are made all the time.

If they don't see any underlying condition we really don't need to worry about the soft spot. Even if there is a condition that caused it to remain open it may not have serious health implications, so I'm markedly less worried!!

I'm not going to make any moves on it just yet, I'll wait until all the appointments are done this month, and maybe until we see her pediatrician at her 2 year check-up.

Signs

I figured it was time to take down the list of Emma's signs. She knows all the signs she saw and still uses many of them regularly. I did want to list them on the blog so we can look back at them!! So, here are the signs Emma knows (I think there is 96!) ...

More
Stop
Go
Wait
Again
All done
Please
Thank you
Sorry
I love you
Yes
No
Goodbye
Time
New
Day
Night
Play
Share
Game

Feel
Happy
Laugh
Sad
Cry
Nice
Hurt
Different

Hot
Cold
Dirty
Clean
Up
Down

Eat/Food
Drink
Sleep
Wash hands
Brush teeth
Bath
Potty
Diaper
Socks
Shoes
Hat
Coat
Clothes
Blanket

Me
You
Daddy
Mummy
Grandma
Grandpa
Baby
Friend

Dog
Cat
Horse
Fish
Frog
Bear
Bug

Cracker
Milk
Water
Apple
Banana
Pear
Peach
Carrot
Juice

Car
Bus
Boat
Bike
Train

Telephone
Bubbles
Ball
Doll
Balloon
Music
Book

Outside
Wind
Rain
Snow
Cloud
Sky
Tree
Leaf
Flower
Grass
Sun
Moon
Stars

New theory

It is often agreed that the internet is both a blessing and a curse, and I don't dispute that. Today, for some unknown reason, I decided to check into something regarding Emma and I don't know if it was a good or bad idea.

All babies are born with two soft spots, or fontanelles. One at the back of the skull, closes pretty fast and a larger fontanel at the front. Anyone who's been around newborns is familiar with the "soft spot" and you may have noticed that you can see their pulse right there.

Well, most fontanelles close up by 12 months of age. Emma's is still there and does not seem to be getting smaller. I have been putting it down to the fact that her head is misshapen, but that has not really changed and I am concerned about the implications of it not closing.

While I looked into the issue I came across a condition call Cleidocranial Dysplasia (CCD). The website is http://www.faces-cranio.org/Disord/CCD.htm There are characteristics listed that Emma shares, though not all, and some of which are not explained by her other diagnoses. Another site even said this: "Some young children with this condition are mildly delayed in the development of motor skills such as crawling and walking, but intelligence is unaffected." This is really otherwise unexplained in Emma.

Rather than stew about it I emailed her neurologist, who we are due to see in a month or so. She was not really familiar with it, which is why I emailed in advance, so she can check it out for our appointment! She did say that orthopedics will be a key in such a diagnosis and we are already due to see them in August. What looks like torticolis could potentially be something else and it is still very pronounced in her neck when she is tired.

So, I could be making something out of nothing! On the other hand I don't want to miss any treatment emma might need for conditions that may have been eclipsed by the Moebius Syndrome because we assume any abnormality is a part of it.

The good news is that if we did confirm an additional condition, Emma has one of the best cranio-facial surgeons on her team and most certainly we will give her anything else she needs.

On the flip-side, I pray that her fontanel is nothing more than a 'red herring' in pursuit of treatment for Emma's conditions. Sometimes I think I know more medcial stuff than is good for me!

While we're talking about health concerns, Emma developed a red bug bite rash on her arm this weekend, but as it faded today I noticed a red ring around the main redness. (In the US a bullseye rash can signal Lyme Disease froma tick bite.) I have not had to remove any ticks, but I don't think that concludes she could not have been bitten. Anyway, the nurse at her doctors office said they won't diagnose it as Lyme's unless it grows, so I measured it and will keep an eye on it.

Red button

We found out today that Emma knows the color red. How? We were at a friends house and someone thought it would be funny to tell Emma to press the red button on our car remote, you know, the one that activates the alarm! (Thanks Mr. T!) She didn't hesitate in pressing it, and had not pressed any others prior to. We had to take the keys away as the temptation was too much for her.

__________________

This weekend was jam packed with things. On Saturday Scott played in a charity softball tournament all day. It was super hot so after the 8 hours in heat it was only fair that his team won the trophy!

In the meantime Emma and I went to a surprise birthday party. The party was at a house we'd never been too, with a pool and a Rottweiler! It was a complete surprise when Emma did not hesitate to walk all around the house, lacking all previous shyness. When we did go out by the pool she continued her exploration, which meant I followed her the entire time she walked around the pool! I won't complain - we asked for her to be able to walk!! Thankfully she does still listen when I give her directions!

In fact a new skill is that I can tell her to lay down so I can vent her belly and she does just that. even pulling her shirt up!

On Sunday we went to church as usual and I was interested in how much walking she would do here. I believe that she has been so hesitant to walk because of her limited vision - she can't move her eyes left or right and due to the torticolis has resistance turning her head. The small vision field must make it daunting in large crowds.

Not to worry, after initial shyness she got going and kept everyone entertained. So many people have followed her progress and are as excited by this new skill as we are (almost!!).

Then straight on to a christening - no nap!! She took a little snooze on Daddy's shoulder but not for long. Then it was off to the party...

At most functions their are a few little kids running around liberated by the large space and their parents distraction. Sometimes they can be annoying, but I've grown increasingly amused by them, especially the kids in our lives. I don't think I ever pictured Emma as one of those kids, it was just too big a stretch. Turns out she was just biding her time!

Again, with lots of people around who knew her story she had everyone entertained just by walking around. When she started dancing too we were all on cute overload! When she was given a gold dollar coin as a gift she carried it around with both hands like it was the most precious thing she'd ever seen!

Despite the total lack of sleep throughout the day she was still peppy when we put her to bed at 8.30pm! The good news is that Emma slept until 8.30am this morning - and so did Scott and I!!!

Pro-talker?

Today Emma had a speech therapy session. It's the first time in a month that Brooke, her therapist has seen her.

At our last session we introduced Emma to saying A, E, I, O and U. We were pretty impressed with how easily she made the sounds. Of course, Emma has been very verbal for some time and used varying sounds and inflection. We had even thought she made sounds close to the words for "all done", as well as Dada and Mama.

As you know on vacation she started saying "Uncle Scott" (and now calls "Scott" by name!), as well as things like up, down, off etc.

Brooke was blown away by Emma today. Not only the number of words she could articulate well, but also her confidence and willingness to repeat any of the words Brooke asked her to. In fact Emma said "bubble" very clearly, which surprised me!

I hadn't really stopped to consider just how great she's been doing with speech (distracted by the more obvious walking!), but in just a month she has really matured and come such a long way.

Brooke said that it has been documented that once children learn to walk their speech dramatically improves, so that fits! I wonder if it's because they really focus so hard on the walking that they ignore speech? just this morning Emma walked the length of the driveway and around the sidewalk in front of the house.

We also gave Emma some food while Brooke was here as she is also a feeding specialist. She also noticed the difference in Emma's eating. She has started to move her tongue out more to move the food around, and to the one side - this is a learned motion that babies pick up as they feed, Emma has to go through the same progression.

It has been an encouraging time!

Pro-walker

Emma has now officially been "walking" for 18 days. However, she is not walking like someone who took their first steps less than 3 weeks ago. She is walking with confidence (increasingly), carrying objects, changing direction etc. This is probably due to her age and the (really) long time she was walking holding hands and cruising on the furniture.

At therapy on Tuesday Melissa was saying that she is more advanced than a 12 month old who just started walking. To illustrate the point as Emma carried a block to me Melissa suggested she come and look in the box for more blocks. Emma instantly stopped and pivoted 180 degrees and went back to the box! She said that was awesome, so I am excited for Emma!

I am aware that some of these milestones may not seem like a big deal to other parents, but then I can only view it from our perspective. We were never sure how her development might be affected by her condition. It is a source of much joy that her body is catching up with her intellect.

Anyway, the past few days Emma has been walking all over the house. Often she is walking for the sake of it and follows me in the kitchen only to follow me right back out! Just today we stopped at the church to see Scott and she walked all around. I hope she will do it on Sunday, but I think all the people make her nervous, not to mention the jungle of legs!!

Last night I thought I would get it on video to show you.

Of course, this was the only time she had trouble with the threshold and crawled a bit!!

After that I gave her the camera and since she kept walking round and round with it I thought it would be fun to press record...

It's so funny - every time Emma walks past us or into the kitchen Scott and I look at each other, all excited! I've said it before and I'll say it again, we will certainly never take milestones for granted!!

Baby Update

You may recall that I am pregnant!! 31.5 weeks to be precise. My due date is September 22, less than two months away. I have to say I feel pretty good. The stairs are a little more challenging than normal and I yawn way more, but other than that I'm "bouncing around" (Midwife's words!).

Today we had a check-up, the baby is measuring well, heartbeat is good and he is head down.

I shared my concern with the midwife over the size of the baby. Scott and his siblings were all between 9-12lbs! Emma was only 5lbs 12oz!! I realize that big babies are born all the time, but it makes it no less scary! Anyway, she informed me that even though I don't have gestational diabetes, what I eat can impact the growth of the baby. The more carbs and fats, the bigger the baby will get. I had no idea - though I probably should have.

So, I will be doing my best to focus on proteins and fruits & veggies. (Not easy - I'm a BIG carb fan!) In the meantime it will hopefully also help me with my weight. I hadn't gained any in two weeks, until we went to Outback last night - d'oh!

With the birth getting so close I am now doing the things I put off, like completing the hospital admission forms - I didn't want to bother until after the ultrasound, as last time we changed hospitals!! At some point soon we'll paint the nursery - I don't think a boy wil appreciate the purple walls!!

Plan ahead

If you know me at all, (and by now you really should!) you know that I like to plan things early. As early as possible! That might be foreign to a lot of people, but now more than ever it is necessary. To visit my family, for example, we've had to plan around births, holidays, hospital stays etc. Not to mention planning for flight costs.

Due to my pregnancy we last visited the UK in December 08, and our next planned visit is not until the summer of 2010. Also in the summer of 2010 is the bi-annual Moebius Syndrome Conference, this time it will be in Denver, Colorado. We had kind of decided to skip it next year as that will a lot to cover in a short time. (Last time the trip was all paid for by a very generous benefactor!)

Yet, as we both thought about it independently we apparently both decided that the Moebius Conference is not something we should ever skip. Not only is it a time for us to connect with other Moebius parents, but also for Emma to discover that she is not alone in having Moebius, and in fact she is really very blessed with the degree of her condition.

When we talked about it over dinner we both agreed to do whatever necessary to make it happen. The debate is whether we drive (1750 miles, 26 hours each way) or fly (3 times the price!)!!

Later that night I caught part of "Hayley's Story", about a little girl with progeria - an extreme premature aging condition. Seeing how hard she and her family have to fight to find treatment (they know the cause, but no approved treatment) and keep her healthy in the body of an 80/90 year old. Well, I truly realized that we are very blessed that Emma is really so very healthy and so much to look forward too.

Rash decision

so this morning I noticed a pin-prick rash around Emma's knees. I thought maybe she had crawled through an irritant, but as I looked closer it was all across her legs, feet, arms and belly. We have been applying a corticosteroid cream for a rash on her butt cheeks (not diaper rash) since Sunday so I thought it might be an allergic reaction to that.

A visit to the pediatrician (who I guess knows better! ;-) determined that it is not the kind of rash that indicates an allergy. That would be more bumpy and inflamed. She swabbed Emma's throat and ran test for Strep which came back negative (but may reveal more after 24hours). She determined that it is most likely some other virus, probably throat related as her throat was red and swollen before the swab.

Emma is showing none of the usual symptoms of being sick, and since she can't tell us it hurts, and we would not see an aversion to drinking other kids would show, we really can't know for sure! In fact she should deal with it better because she won't get dehydrated!!

I did immediately call Christina and told her to watch Nathan. Even though Emma hasn't been to the hospital since last week I won't take chances. I will also not be visiting in case I transmit it. (Some people might not worry - I'm not one of them!!)

Careful!

Be careful what you wish for, right? Well this morning Emma was quite the character. As I vented her, which required some pretty strong squeezing on her belly she started talking. After a few repeats of the same sound I looked at Scott and asked if he heard her. He did.

What was she saying? It was a pretty clear string of three words - "Oh my gosh." She said it several times, but if you ask her to say it, she won't! It's not the best phrase for her to say, and she has heard it from me when I get frustrated. However, I maintain it could be much much worse!

There is no shortage of new sounds coming out of her mouth and she really is trying to talk as much as sign. Mummy is usually signed, whereas Dad or Daddy is verbal! I don't mind - the sign is unmistakable!

Nathan

Nathan is hanging in there at the hospital. We visited him again last night and he was up and about the ward. It's pretty cool, they attach all his monitor wires to a small box that he wears in a backpack, so he is still monitored but not attached to the bed. He took us to the playroom where he seemed like the lively little guy we all love.

Peeking out of the top of his shirt you can now see the scar that runs from his collarbone to halfway down his chest. Apparently he has no wish to see it just yet. I can only imagine how itchy it must be, but he's doing pretty good at not bothering it, with the odd reminder!

Nathan has always been a big drinker. Even as an infant he could chug a bottle at light speed, seemingly not needing to breathe during a drink! Since his surgery they have had to force him to even sip a drink. Yesterday though he actually requested a drink, so that's a great sign of recovery.

It seems as though his heart is still taking it's sweet time to recover and the countdown is now on. If the regular rhythm does not return by Monday they will be fitting Nathan with an internal pacemaker which he will have to deal with the rest of his life. We are still praying that won't be necessary.

Christina tells me that his heart rate was in the 40's when he slept last night, and that actually made it difficult for him to sleep. It is only in the 60's when he's awake. (For comparison, Emma's rate is in the 70's when she is in a deep sleep, and in the low 100's when she is relaxed and awake.) However, because his blood pressure was fine they didn't intervene. Now both Christina and Nathan are sleep deprived!

Here are some pictures from our visit last week...

Emma gets dinner in the waiting area

Emma tries to steal some of Daddy's drink (it was empty!)

Uncle Scott tries to cheer up Nathan on our first visit. Also in the picture is Bearface, the cuddly Rottweiler Scott bought me for my 25th birthday. Nathan loves playing with him, so we washed him and he's keeping guard at the hospital!

Dora Love

We all know how much Emma loves Scott. If he comes in during a therapy session she loses all focus! There is however one that she seems to love more...

Scott came home for lunch today and Emma was in her chair getting a tube feed. To keep her still I let her watch cartoons. Disney in the morning, Dora at lunchtime. Even after she was out of the chair she was mesmerized by Dora. Check it out...

Now that Emma is walking around we needed to get her good supportive shoes. unfortunately she is only a size 4, which is still considered infant size, with very narrow feet, so options are limited. Despite that I found her a pair of trainers (sneakers) that she seemed to like. In the store she walked around in them and stomped her feet in front of the mirror. They look funny as they are quite bulky on the ends of her little legs!

Here are some videos I took on Sunday which are just cuteness on camera!

Krackalackin'

Nursery Time

Two weeks ago I decided to go with Emma into the nursery at church. She simply won't sit through a service anymore, and instead of one of us sitting in the lobby trying to keep her amused it makes sense to sit in the nursery with her, where she can play with other kids and toys.

The first time went well. She was happy to be there and since I stayed we didn't have to deal with separation. Unfortunately though we did encounter one problem - snack time! With 10 kids between 0-3yrs, there is bound to be a snack time. The older kids sit with a juice box and some goldfish crackers. Emma prowled like a hungry hyena, waiting to grab any crackers that dropped to the floor!

As I was watching her, and Jeremy and Christina were taking care of the other kids we were able to avoid a choking incident! It did however raise the question of times when our friends are not in there!

Last week they were taking care of the kids again, and only had about 5 so I left Emma in the nursery for the entire message. She didn't even flinch when I left her, seeing a TV close to floor level and Uncle Jeremy right there. "Mum who?"

The original concerns about putting her in any childcare situation were focused on the germ factor - it's called the common cold for a reason!! During the summer this is less of a concern, plus she now has nursing care to handle the additional care overnight if she did get sick. The other factor is her g-tube. We are on a schedule now that means she eats before church and rarely needs venting during a service. However, we still can't leave her with someone who doesn't know how to handle it, and your average nursery volunteer might not be comfortable with a tube in a childs stomach!

In addition, I am not convinced that people really understand that Emma can not put any solid food in her mouth without constant supervision. A couple of times she has choked on food that has broken off in her mouth and she doesn't make a sound. She can't cough effectively to get it up and doesn't know how to chew. Most people are not familiar with child CPR either!

So, even though she is getting older, the opportunities for leaving her in the care of others are still very slim. The odd church service will have to do, and the rest of the time we'll have to stay with her.

When the new baby comes things will get interesting!

Mummy's helper

Emma loves to copy things she sees us doing. When we stand in the kitchen talking with our arms crossed, she's right there with us! When we leave the house and I tell myself each of the stove burners is off, she is pointing right along with me!

So of course, when she sees me taking the laundry out of the basket to fold it, she wants to do the same, sort of. I take it out, fold it and put it on the sofa or ottoman. Emma picks it up and drops it in the basket! I now have to leave a pile of clothes just for her to do that, so I'm not folding everything twice - usually her clothes!!

My baby is turning into a big girl!!

Busy week

It sure has been a packed week this week. Between bedtime and naptime there are only about 10 waking hours for Emma each day, so that really doesn't leave much room. Despite that we got a lot done.

We went to the hospital 3 times, though only once did Emma see a doctor!! We went grocery shopping twice, moved Emma into her new bedroom, had therapy, worked at the church for a few hours (Emma played with Miss Judy!) and Kimberly spent the day with us on Thursday.

Earlier in the week Emma surprised us again with her growing strength and determination. On Sunday she did this for the first time...

In addition we made our first trip to the Thompsons backyard pool on Wednesday. It wasn't super hot, but worth the initial chill of the water to really cool us down...

Trust me, that's no halo!!! ;-)

We opted for a life jacket this year so we can encourage Emma to kick around more, maybe start the swimming lessons. However, either the cool water or just basic fear meant that she clung to us tightly and whined for quite a long time. We thought it might be the jacket but she was the same after we took it off.

After a while though she got used to it and let us pull her through the water so she could kick...

Hospital Visit

This evening Scott and I went to visit Nathan. We also took his big brother, Jeremy, with us as he had not been to see him yet.

Unsurprisingly Nathan was excited about seeing "Uncle Scott" and we were able to make him laugh with silly comments and funny memories. It was good to be helpful. Apparently it was the most animated he'd been all day - which for Nathan was about 5% of his usual energy level.

It seems that he's been doing pretty good through the day and his heart is showing signs of trying to kick start itself.

After tomorrow comes one of the hardest times (I found) in the hospital - the weekend! It's like all progress stops. I'm not sure if it's because the familiar staff of the week are not there, the hussle and bussle of tests and new admissions is quiet, or what. I just remember the weekends feeling like the longest days ever, which is doubly odd as they were the only days Scott and I were both there!

Perhaps it was because only 2 people were allowed bedside the entire time, or because they wouldn't make changes to Emma's feeds and such over the weekend. It felt like the pause button was pushed Friday night to Monday morning!

Anyway, the Cardiac ICU is a little less restrictive so I would hope that even just being able to have more people bedside should make it pass quicker. Maybe it wasn't such a drag in the early days, but it's tough to recall.

It was a small treat tonight, as we got dinner with the guys in the hospital cafeteria we saw Dr. P, the neonatologist that had the most impact on Emma's treatment, including being the only one who knew which pulmonologist was familiar with Moebius. He seemed to remember us and was very friendly.

I also saw her plastic surgeon, but couldn't remember his name in time to stop him for a "chat." I had a couple questions about setting up future consultations! Of course I saw her pulmonologist on Tuesday but not expecting to bump into him completely forgot the question I had for him!!

Nathan

I just wanted to ask you all to keep praying for Nathan. There seems to be some complications following the surgical procedure and he needs a lot of healing.

Nathan was born with a heart condition that was inevitably going to need fixing at some point, which turned out to be sooner than we had thought. The side effects of the surgery were many and of varying likelihood. It seems that Nathan's complications could require a permanent pacemaker to restore the functionality of his heart.

I've quickly realized that this is way bigger than any of Emma's surgeries, and I can't even imagine what his parents are going through. The closest we have experienced was whether Emma's bowels would function normally. Everything else, like feeding has an alternative. There is no alternative to a functioning heart!

You can keep up to date with Nathan's condition on Christina's blog at http://redcupcentral.blogspot.com/

Take Two

Today was Emma's actual appointment at the hospital and we were there on time! Unfortunately the doctors took a little long getting round and we were there for 2 hours!

That aside, we got good news. Although Emma is only 21lbs 10oz, meaning she gained just 5 oz in 2 months, she is growing well and her length has actually accelerated so she is now on the growth curve for that! Apparently at her age her weight gain should only be around 5g per day and I guess that's what it was - I'm not doing the conversion!!

It was surprising though that she continued the behavior from the dentists office. She started freaking out when I took off her clothes to weigh her and then when the nurse tried to listen to her with the stethescope. I was able to calm her down though by asking the nurse to let Emma show her where to put it. Emma bought in and "helped" the nurse.

She didn't go for it a second time when the doctor came in and clung to me like a limpet. She seems to think if she climbs on the baby bump she can get a better grip on me.

The toughest part about these visits is when there is a long wait in the consultation room. Short of some colorful wallpaper there is nothing for Emma to do - even my Nintendo DS was rejected after a while. We were able to pass some time when I stood her against the wall and she would walk across the bed to me. She wouldn't do it in front of the doctors though!

Toys and books don't work because she really just wants to crawl around the floor - not on my watch!!

After we got out we visited Nathan, who's surgery went well. He is on a lot of pain meds and out cold really. Best way for him to be as he has quite the range of tubes and wires. It's definitely tough to see a lively boy so listless, but he is in the best place and his parents and both Grandmas are by his side.

We didn't stay long, it can be quite taxing to make conversation with visitors when you're so focused on your child, so I didn't want to be a pain. Besides Emma was overdue for a nap and passed out int he car on the way home - nice!!

By the way, she moved in to her new bedroom last night and seems to like it alot. Her nurse loves the new room!! I'll get some pictures up when it's all finished!

Brain Freeze

Today Emma and I headed downtown for a check-up appointment at the hospital. It just so happened that my friend was also taking her son (my Godson) for pre-op stuff at the same time. Little Nathan is having heart surgery tomorrow. :-( So we car pooled and drove together.

We split up and Emma and I went to our appointment, only to find out it is actually TOMORROW!! I'm not sure how I made the mistake, and thinking about it, we never see that Dr on a Tuesday! And of course, he wasn't seeing patients today so we have to go back again tomorrow.

I could put it down to pregnancy brain, but this morning Scott drove an hour to work only to realize he'd left his tool belt and screw gun in my car!! Thankfully he had a spare gun and charged battery in his trunk! Apparently we're both jelly brains!

As for Nathan, he got all his tests done, the last one being a blood test. In the car ont he way home he told Christina "Don't bring me here again Mom!" Unfortunately his surgery is tomorrow so hopefully the 5.30am arrival time will mean he is too tired to care!!

Nathan

I would like to ask all of you to pray for Nathan, and his parents. I think I'm a little de-sensitized to the anxiety of surgery, seeing it as almost routine and normal, but I'm sure Christina and Jeremy are a little nervous. Then there is trying to keep a 3 year old occupied and calm in a hospital room for 5 days - that, I think, has to be the worst part having done hospital stays a few times!

Mental Dental

After a busy weekend, we have a pretty busy week ahead. Scott is back to work, which is good and we'll probably all get into our routine again.

Today Emma had her second dentist appointment. She was fine the first time and since then we've been brushing her teeth daily, which she actually enjoys. Today however, not so much! She started screaming as the assistant put on her gloves to brush Emma's teeth! I had to hold her on my lap with her head on the assistants lap as she fought the whole time.

While we waited for Dentist Rachel I distracted her with a basket of stickers they have for the kids. She calmed down, but still clung tightly to me. When the dentist approached she got upset again and really fought hard against further examination - she even kicked her shoe off!

It's a childrens dentist office so they don't get too bothered by the fuss, thank goodness!

The good news is her teeth all look good, no cavities. Her top front teeth have always been slightly discolored and apparently this does make them more susceptible to cavities so we need to floss them regularly. That's fine except I can't even bother to floss myself!! I'll try though!

After we ran some errands and it was all good. Oh, except that someone put a huge scratch in my drivers door! What's up with that?!!

There's always something.

Freak out

A week of highs would not be complete without a low or two! Life's all about balance, right?!

This week being pregnant really began interfering with my sleep. For a while now it has been painful turning over due to pelvis strain, but heartburn was added to the equation this week. I don't get it very often during the day but I am finding it flaring up during the night. So the 2-3 bathroom trips take me longer to sleep after.

No big deal? My sleep affects me more than I ever realized. Not only does it make my moods darker but also how I think about things.

No doubt the huge steps Emma has made this week brought me insurmountable joy. I was just less able to fight off the worries and fears that the rest of life stirs up.

When I gave up work in 2007 I never anticipated Scott would be laid off, much less for 8 weeks! We have been incredibly blessed that he has had side work to more than cover the lost income, not to mention the extra time we've had together and the time he has been able to work on the church renovations. Yet when I am tired my thoughts turn to the future and uncertainties we all face. I forget the provision that God has already shown us.

Then there's the new baby. Finances aside, I found myself freaking out about how I will be able to handle two children. I'm not so worried about daily routines, as much as how getting little sleep will affect my ability to cope! Plus, how do you run errands with two children? I know it is done by mother's the world over, so there is hope for me!

You see, when you don't get enough sleep, the silliest of things seem like giant problems! I broke down in tears a couple of times Thursday and at 11.30pm as we lay in bed Scott listened to all the thoughts that were getting in my head and then said"Can I make an observation? You only seem to get upset about stuff when you are tired. How can we get you some extra sleep?" He's the best!!

Unfortunately we didn't have a nurse that night so I got even less sleep than normal!! It's just not that easy to get more sleep when everything else requires the same attention!

So, how to snap out of it?

It so happens that I am currently posting the daily devotions on our youth groups blog (http://c4youth09.blogspot.com/) and as I typed it from the book I took in the scripture and message. And so concluded, not only am I incredibly blessed in many ways, but I am also able to look forward to a future in heaven with God. That alone puts everything else into perspective. Time here is short and we can only do our best to serve God and others. We can rely on the Lord for the rest...

For the pagan world runs after all such things, and your Father knows that you need them. But seek his kingdom, and these things will be given to you as well. (Luke 12: 30-31)

On our way

There are currently three fundamental steps in Emma's journey that we are focusing on right now. They are eating, walking and talking. It is my understanding that they usually develop fully in that order from birth, 12-15 months and 13-18 months respectively.

Emma is almost 20 months old and given the challenges she has faced is doing incredibly well. We know she can walk and will do more with confidence. She is starting to talk, often combined with signing which makes it easier. And then there is eating.

Today I did not finish my lunch before the end of her nap so she was pestering me the whole time I was eating. Refusal to comply with her wishes often ends in tears but she was pretty mild today. Since I hadn't lost my patience, once I was done I offered to feed her which she was happy about. (I need patience for feeding as it can be a slow and frustrating time!)

I strapped her in and grabbed a jar of Butternut squash. Heeding the advice from the swallow study I got a small amount on the spoon and put it as far into her mouth as comfortably possible, scraping the food off on her teeth on the way out.

Right away I noticed she wasn't pushing it forward and out in her attempt to eat. I told her to 'chew' which for Emma is basically closing her mouth repeatedly as one might do after tasting something. Emma usually leaves her mouth hanging open so we have to tell her to close it, which really seemed to help.

No food came back out and it wasn't long before she swallowed. I asked her to say something so I could hear if she had anything at the back of her throat and she was clear! We did about 5 spoons and each one was swallowed!! In fact the bib has no food on it!!!!!

This was the first feeding since the swallow study, although we have given her plenty of pretzels and other items to encourage her oral motor skills. and how very encouraging it was. It's often tough for me to see progress being so involved that it must be good!

Emma managed to top it off right after though - I had hung her bag and tube ready for a formula feed and she crawled over to it, pulled her shirt up and tried to hook it up to her g-tube herself! I wonder if...

Daddy's Girl

If there was ever any doubt in the importance of the need to spend time with Daddy Emma removed all of it tonight.

After taking the youth group tubing today, Scott was hanging out with Emma, playing on the floor subtly trying to get her to stand by herself. We have been able to stand her up and quickly move away so she'd stand for a few seconds but this was different.

I was writing a blog watching out of the corner of my eye the first time she went from all fours to standing up all by herself. I quietly grabbed the camera before she did it again. (In fact I never acknowledged what she was doing at all and Scott kept it really low-key too. We were screaming inside!!)

And here it is...

And again...

And then Scott took it one step further, make that 21 steps...

And since then Emma has walked back to me, back to Scott, walked carrying a book and even watched the video of herself walking.

Her therapist said to us on Thursday that she's too smart to trick into standing or walking, and smart enough to understand it if we give her instructions. That's exactly what Scott did and she is!!

It's a proud moment for any parents so I can't tell you if it means more to us, I just know that I was beginning to wonder if it would ever happen. We knew she could, I just didn't think she would!!

God is good, all the time!

Miss Personality

We are really enjoying watching Emma express her personality and individuality (except when it means ignoring our instructions!). Each day she seems to have new mannerisms and quirks that make us laugh or say "Awww!"

In this picture you see Emma watching TV while I get her formula ready. Probably nothing amazing except to us, this is very much a big girl pose! Our baby's growing up so fast.



This is more of Emma's quirky side. At random times, wherever she is crawling she will simply drop to the floor and lay there for a few seconds! Here it's the cool wood of our bedroom. This morning the carpet in the church lobby! No matter the texture, temperature or cleanliness!

This is a recording of Emma "sleeping" at naptime on Friday. She did this for about 2 hours in total! It was very cute to listen to, if not frustrating trying to get her to sleep!

This morning at church I had the microphone before service and Emma was talking in to it for everyone! While younger babies were trying to eat it, she held it to her mouth with two hands and talked! Apparently she is watching everything!!

Happy 4th!

Today is Independence Day in the US, the day to celebrate the defeat of the British rule in America. AKA America's Birthday!

Being British today is just an excuse for a barbecue or used to be a day off work! On this July 4th Scott is working at the church so I decided to run errands with Emma. I wasn't quite sure what would be open on the holiday because on Thanksgiving everything closes.

What I learned was that the roads were deserted and so were the stores!! Saturdays round here are the day to stay off the road because of terrible traffic - not today!! It was a ghost town and took us no time at all to get around.

The highlight of my day was at Kohls department store. I received a $10 gift card from them in the mail and it expired today so I went to spend it. I found a $26 pair of sunglasses on sale for $10.99. With the giftcard, I ended up paying just $1.06 for some designer sunglasses - bargain!!

We then stopped at church to take a coffee for Daddy. Emma was customarily shy at first, before she started drawing on a piece of wood with Scott's pencil!

I'm not sure what we'll be doing this evening but I'm sure I'll hear more than one joke today about the British being defeated!!

Carrot!

This week Emma started to sign 'carrot' which is probably one of the only ones she couldn't do from the DVDs. I was quite excited, but more so about the words she is saying. So I have started a tracker on the right of the blog so you can see her progress.

The funniest right now is "uh-oh" which is not really a word, but she says it so clearly and sounds so cute. In fact she decided not to take a nap this afternoon, having had 40 winks in the car, and spent about 2 hours talking to herself!

I fear we may have to do some re-training for nap time!!

Just right

This morning Emma and I were out in the car, listening to B101 soft rock radio! Phil Collins's In the Air Tonight came on and made me think of England however many years ago. Songs can often do that to me, and I find myself wondering how did I end up where I am today!

Let me back track a minute...

After our vacation Scott and I started working on Emma's new bedroom. We went and bought the paint and rug on Monday, painted Tuesday and finished up last night. This morning Scott (who is still off work, but it's okay we have faith it will not be much longer!) got up to let the nurse out and set to work installing the ceiling fan.

When he finished and came in our room it was about 7.30am. I'd been awake for a little while, enjoying my lie-in!! No sounds from Emma's room until we were checking out the fan together. We went in to her room as she sat up on her knees and greeted us. She is so cute!!

She stood up to get out of the crib and gave us both big hugs and was chatting away. My heart melts when she wakes up so happy.

Scott went to work on renovations at church while Emma and I headed out to IKEA! What could we possibly need at IKEA? Emma has several machines in her room - CPAP, pulse-ox, suction machine and food pump. The food pump is suspended on an IV pole, but the others are on open shelves. Needless to say Emma loses to play with them when she's in her room! We decided to get a cabinet with a door so we can leave her in the room without worrying what she's doing to them!!

So, on the highway to the store she starts choking, more than normal. I pull over on to the shoulder as quick as I can to vent her. The whole time cars and trucks are whizzing past shaking our car. I was pretty nervous about getting hit and got back on the road as fast as I could, discarding the formula that I couldn't get back in her belly.

And as we start off again the song comes on the radio...

I look around me and wonder how I ended up driving on an American highway in the middle of the work day. Really, most people I grew up with are probably at work somewhere in England!

Here I am, not working, home to take care of my precious girl, about to have another baby, while my awesome husband is doing construction at church because he's out of work. Not what I'd have ever expected, yet every detail feels totally right. It's a good feeling to sense you are right where you are supposed to be!

Despite all the uncertainty of medical issues, work, additional family members and all the other stuff that seems to come out of the blue I find great joy in knowing that there is a purpose in all these things and that Jesus walks right beside me through it all.

I'll post pictures of her room when it's finished - it couldn't be more different than her current room!

Chatterbox

We have been working on Emma's speech a lot lately and while she finds it difficult to articulate many words without the lip movement she is doing great.

While we were on vacation Emma spent lots of time with the adults, two 5 year olds and a 3 year old all talking. The kids love Scott, and were always trying to play with him so a phrase Emma heard a lot was "Uncle Scott." Emma liked the sound of it.

Some of the words she is saying, and sometimes using with signs, are:
Up
Down
Off
Mama
Dada
Uncle Scott

The cutest part is that when we want her to say something, rather than sign we point to our mouths, so when she says things she does the same thing!

As with the eating, speaking is going to be slow progress also, and to what extent she will have trouble we don't know. It is encouraging to see progress, especially when children half her age are using words. The sign language is great and has been priceless for her to communicate but I am increasingly eager for her to catch up with her peers. I know - patience!!

And this is just Emma being goofy...