Friday, September 28, 2012

Proud to be an American

Today was a BIG day for our family. Big as in waited 18 years for this BIG!

 Hubby became a citizen.

And changed his name. For reasons of privacy, I won't divulge any more details, but for those of you who know us, this has been a very long and arduous road with many delays. Thank the Lord it finally happened.

Waiting in the 30 minute line to get inside the building

Boyo was thrilled for Daddy to become a "Merican"

All dressed up to celebrate

Waiting in the TWO HOUR line inside the building

Daddy saying his new name!

The pledge of allegiance
The kiddos couldn't sit still or quietly enough in the courtroom, so they had the run of the lobby!

The kiddos were champs. After getting there at 8:30 am for the 9 am start time, we only got out of there at 12:30 pm!! Apparently it was a special ceremony for all those who wanted to change their name and only happens every three months or so. There were about 200 participants, each of whom had to say their new name, plus an address by the presiding judge, as well as one by a visiting speaker. Oh, and before all 1.5 hours of that, after everyone was finally settled and quiet and in the correct order in the courtroom, we sat and waited for THIRTY minutes for the judge to appear!

Of course I had no idea it would be that long, so I didn't take enough snacks, diapers, milk, books or toys. They did awfully well considering although we spent most of the actual ceremony out in the lobby. Ha! But we were there and have the photos to prove it. Whew!

Now we're ALL Americans!!

Congrats on this long awaited day Husbie. Welcome to the USA!

Saturday, September 22, 2012

Party Time

After making it home last night unexpectedly, we were so glad to be home with the Husbie and Boyo! And that meant that little Miss was able to attend her first birthday party she's ever been invited to. Such fun. She got all dressed up in her party dress, complete with oxygen accessories :) and off we went.

All dressed up
We even lugged the oxygen with us for the first time out!
Watching the birthday boy eat his cake
Her buddy thought she was pretty cute and tried to eat her right up, including her shoes!

Friday, September 21, 2012

Friday: Discharge

 Today was pretty good and best of all we were unexpectedly released! We were going to be staying until all the test results were back and until they could place the feeding tube in again. However, the dietician we saw has recommended a new formula for Sophie to try and boy, does she LOVE it! She has been finishing all her bottle the past 24 hours since she started it and has increased the amount we're giving her. So the docs decided late this afternoon that they would leave out the feeding tube for another week to see if she can gain on her own.

But this morning, since I didn't know when we would be home, I asked my friend Andria, who was keeping Jack today, to bring him to visit us, since we hadn't seen him since early Tuesday morning. I was missing that boy so much! It was wonderful to gather him up in a big hug when he arrive this morning!

Loving seeing our Jack boy again!

My sweet friend Andria who brought Jack to visit (Jack is in love with her and calls her "mine lady fwend Andre". Ha!)

Jack loves getting up into Sophie's crib with her

Lovely Aunty Robin brought lunch and cuddles
 Then this afternoon I took Sophie down to the main lobby of the hospital where the Miss America beauty pageant queens were hosting a princess party. So cute! The kids made crowns and got autographs.

Sophie with her princess crown

A picture with Miss Georgia
 This afternoon Ness, Sean and the girls came for a visit which was lovely. While they were there, Andre and Jack came by to see us too. And then suddenly we were discharged and so packed up in whirlwind of final instructions, prescriptions and supplies and headed home. Whew.

The cousins came for a visit

Thrilled to be home tonight!

Will post final results when they are all in.

Thursday, September 20, 2012

Thursday: Waiting

Today was all about waiting. Waiting for blood test and sleep study results...waiting for the PH probe to come out...waiting for Sophie to poop. Ha! Yes, we were. But she did finally. So today she had more blood tests, a stool sample taken, and the docs came by several times, simply to tell me there were no more results. But the day was interspersed with some nice visitors!

Aunty Ness came by to visit for the morning

My friend Elise very kindly brought a delicious lunch

And Sophie was given this gorgeous Teddy Bear by a our new friend Lauren from down the hall

Wednesday, September 19, 2012

Wednesday: A Tough Day

So today was a bit rough. Sophie was getting an Impedance Study done. This entailed a tube being inserted into her nose and threaded down her throat into her stomach. On the outside end this is attached to a little machine. I have to push one button when she begins eating and when she finishes; another button when she lies down to sleep and when she gets up and another when she takes her meds. It will be in for 24 hours.

She wasn't allowed to eat after 5 am. The sleep study ended at 4 am (in the Sleep Disorders department of the hospital) and we were then moved back to our room. I fed her a bottle and put her back to sleep. The nurse woke her up at 5 am for bloodwork (who thinks any baby is going to take kindly to being stuck with a needle at 5 in the morning?!). The tech woke us up at 6 am to do vitals. And the doc came in at 7 am to talk to me. After only about 3 hours of sleep, I had a hard time focusing on what he was saying!

 So that began our day. It didn't improve, let me tell ya!

 Around 9 (5 hours after her bottle), they told us they would be in shortly to do the probe. An hour later, they finally arrived and did the probe, amid much wailing and gnashing of teeth from poor Sophie. We then waited 2 hours for X-ray to arrive to make sure it was in the right place. X-ray came at 12. I was told she could have a bottle as soon as the radiologist had read the x-ray and made sure the probe was in the right place. An hour and a half later (during which our nurse sailed happily off to lunch and couldn't be found), they came in to tell me that the probe was NOT IN THE RIGHT PLACE. What?!! I made sure they knew I was upset that time. Everyone up in arms that Sophie isn't bigger, needs to eat more etc. And then they proceed to starve her for 10 hours!

Poor baby was faint with hunger after waiting 10 hours for a bottle!

This time I couldn't even stay in the room, I was so upset. They had to pull out the probe and then insert another one. My nerves just couldn't handle hearing her scream again. I felt awful, as this is the first of all her procedures this year that I haven't been there for. My brother in law Sean had very kindly come over to bring me lunch and he stayed with me and then even came down with us when we went to get the second x-ray done. It was really great to have some support. We still had to wait another half hour for the x-ray to be read, before she could eat.


After Sophie had eaten and taken a decent nap, we toured the halls in a fun red wagon to keep her occupied. On our travels we met a great little boy named Aidan and his mom. Aidan visits sick kids in the hospital and befriends them and plays the harmonica for them. Sophie was enthralled with Aidan and his harmonica and gave him the first smile of her hospital stay! Aidan's cousin Lauren was a couple of rooms down from Sophie on the ward, so we made friends with her and her mom too. It's so nice to get to know people a bit when you're on the ward for a while.

Sophie captivated by Aidan's harmonica playing

The day ended on a much better note than it had begun, with a visit from DADDY!!! Who brought along some gorgeous roses for his girls :) What a nice pick-me-up!

Sophie and I were thrilled to see Daddy!

Tuesday, September 18, 2012

Tuesday: A Diagnosis

 So we are settled in at the hospital for Sophie's few days of testing. We arrived at 10 am this morning and after some confusion about where we were supposed to be (apparently it's tricky to do a CT scan AND a bronchoscopy at the same time, as one is usually done in the radiology department and one is done in day surgery), we finally got called back at 12 noon (her procedure was scheduled to START at noon!). One of our pastors, Pete, came to pray with me and Sophie before she went in, and Robin came to be with us for the morning too. Wonderful, supportive friends!

We finally got into a prep room and signed papers, got her vitals done etc. The doctors and the anesthesiologist all came by to go over things with me. I thought I'd get to go with her while they sedated her, but I wasn't able to. It was very hard seeing them take my little Sophie away! Thankfully they sedated her with gas and only then did the IV and all the other poking.

After only about 30 minutes, Dr. Popler, our pulmanologist, came to find me and told me it was all over and that Sophie had done really well during the procedure. Structurally she looked perfectly normal except for an extra branch in her lung, which doesn't do any harm and about 20% of kids have it. And then, the moment I had been waiting for!! He told me he HAD seen the ground glass opaciaties that are characteristic of the rare lung disease they were testing her for: Neuroendocrine Cell Hyperplaysia of Infancy or NEHI for short.

So. We have a diagnosis. Will share the story of why we suspected this in another post. The doc told me the opaciaties were very slight, indicating that her case was mild. There did not seem to be any inflammation or infection associated with this in her lungs.

You can read about NEHI here: It is rare, has only been labelled as recently as 2005, and there is no cure. However, children seem to grow out of it, and it can be treated with oxygen support.

All ready to go back to get her anesthesia...thanks for helping me Robin!


Another friend, Ruth, came by for a visit this evening.

A bit dopey after the general anesthetic! She is a champ!
Doing her sleep study
Tonight we are doing her sleep study, to see how her body responds when sleeping (snoring, loss of oxygen, obstructions in the throat etc.) She is also having blood work, a stool sample and a PH probe study done while we are here.

Saturday, September 15, 2012

Stay Tuned...

Well, we are headed to the hospital again. This time, however, it is a planned stay! Sophie will be going in next Tuesday (9/18) for several days of testing and monitoring. She will have a high-resolution CT scan and bronchoscopy under general anesthetic on Tuesday at noon (to look at her lungs) and an impedence study (check her acid reflux) and sleep study (breathing/oxygen levels) done while in the hospital, as well as any other tests they want to do. She will most likely have the feeding tube put back in before we leave too.

We are following a hunch that she may have some specific, relatively rare, lung issues. Not sure yet, but are dealing with a good pulmanologist who specializes in these issues.

Hopefully we will have a diagnosis soon, as this will really help in knowing how to help her breath easier and grow. I think it will also help me just to know what is wrong with her.

Would appreciate prayers for our hospital stay that Sophie would handle everything ok and specifically sleep well while we're there.

Don't want to bore with all the medical details but will update when we know more next week.

Friday, September 14, 2012

9 Months

First of all: that last post was a tad bit on the negative side. Sorry about that. Things have remained relatively calm around here although the washing machine broke on Tuesday, Andre got the most horrific case of food poisoning EVER on Wednesday, and the kids both woke up with colds on Thursday. Ah well. On the bright side, we have been thoroughly cared for by wonderful friends this week, watching the kiddos, phone calls and meals. THANK YOU!

And now for something nice: Miss Sophie turned 9 months old on Sunday!

13.15 lbs and 27 inches long. A real porker, this one. Ha!

16 oz a day (needs to be at 20 oz; I can see another feeding tube in her future. Ugh.)

Table Food:
She IS a real Miss Piggy when it comes to finger food. She stuffs her little face full of whatever I put in front of her and especially loves peanut butter which we tried this week.

Waves goodbye very well now
Desperately trying to move around and is almost crawling!
Getting more frustrated that she can't do as much as Jack
Proving quite determined in trying to!
Starting to say 'da da' when she sees Daddy
Loves music, dancing and her big brother
Is still happy going to people she isn't familiar with
Recognizes aunts, uncles, cousins and grandparents

Still our placid, sweet girlie. Love you Sophie Joy!

Wednesday, September 12, 2012

A Little Bit of Crazy...

So, yes, we've had a lot going on over here. A lot of CRAZY! Last week was particularly interesting, hence my silence. Ok, here's the run down:

Wednesday: Jack cut his chin open while carrying around one of Sophie's portable oxygen tanks. Blood everywhere, pretty upset little boy, doc office visit, then Urgent Care until 9:30 pm. Positives: we convinced the doc on call to do Dermabond instead of stitches. Whew. Narrow escape there.

 Thursday: Andre was badly rear-ended on his way home at night. At the ER until 4 am, bad whiplash etc. Repercussions for car and hubby ongoing. Negotiations with other driver's insurance, ongoing. Ugh. Positives: he's OKAY!!!

 Friday: Was up at 6 am and out the door by 7:15 with both kids in tow to get to Sophie's pulmanology appointment, 40 minutes away by 8 am. Walked in to the office only to be told that the doc was out sick that day and we had to see someone else. I almost cried. Then almost yelled at the very young, very annoying receptionist with the very bad attitude. Managed to control myself enough to tell her that I had specifically needed to see this doctor because he specializes in the disease that Sophie might have. She said flippantly, "Oh, they're all very well qualified doctors." If looks could kill, she would have died. Positives: the doc we did see was great and very thorough.

Friday afternoon: with all the craziness I had forgotten to order more oxygen for Sophie, so called to get a delivery. Was told they had no big tanks available until next Wednesday. What?! In the whole of this very large city?! Spent almost an hour on the phone trying to figure out a solution. Finally got them to deliver a special machine that pulls oxygen from the air. Relief. Positives: the machine is so much easier to deal with than the tanks! Hope we can keep it.

 Saturday: woke up to Sophie having got rid of her feeding tube. Yup, completely out and lying at the end of her bed. Not sure HOW she got all that tape off but there it was. Oh well. Was so over ER visits and drama that I just shrugged my shoulders and let her be. Figured I would wait until her 9 month check on Monday to ask the doc about it. Positives: gave her a very soapy, very thorough bath right away. Loved scrubbing all that sticky tape residue off her little face and neck!!

 Sunday proved uneventful. Thanks be to God.

Monday, September 3, 2012

Labor Day Weekend

Long weekends are for pancake breakfasts...

And time with cousins...

And cuddles with Nana and Grampa on their way back from the beach

And movie nights and swimming and grilled lamb with corn on the cob. Happy long weekend!

Sunday, September 2, 2012

Cabin Time

 This past week I was able to get away for a night with two of my dearest friends. Miss S came along too, so it was a true girls night away! The cabin was beautiful, the beds comfy, the fondu and wine delicious, and the company relaxing and fun! Thanks for a wonderful break Robin and Hannah!!

Our fabulous dinner of cheese fondu

Trying to keep Sophie out of trouble, as I forgot to take her high chair!

Sophie having a cuddle with Aunty Hannah and getting acquainted with her new little buddy,  who is still happily incubating but due to arrive next week!