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Wednesday, July 30, 2014

Happy Birthday Evelyn!

Evelyn (my maternal great grandmother) Hazel (Lindsey's paternal great grandmother's name) Royal was welcomed into the world of air-breathing creatures on July 29th at 1:41AM.


After a slight roller coaster ride during the day wherein, during Lindsey's weekly appointment, the doctor was concerned that the baby was breech or transverse.  Our day ended knowing that she was head down so we collected our kids, were relieved a mandatory c-section wasn't in order, and headed home.

By 10PM on July 28th everyone in the house was fast asleep, with the exception of Lindsey who was experiencing increasingly strong contractions.  At midnight I was awoken into a confused stupor by an extremely pregnant wife  (who had agreed to let me sleep all night if possible).  After she explained to me a few times that it wasn't time for me to go to work I managed to slip into a time-sensitive reality.

Lindsey had progressed rapidly and our friend, Nicole, was on her way to relieve us of our sleeping "angels".  We made it to the hospital, passed multiple unconcerned employees, up three stories, and to the nursing station where Lindsey collapsed in pain which finally prompted a response.   In Room 24 (where Capper made his first appearance) Lindsey's water broke at 1:17.  At 1:41 Evelyn Hazel arrived.



There hadn't been time for admission, drugs, or even pleasantries.  Luckily her doctor must live close by, because she made it five minutes before the grand finale!

17 hours after we arrived at the hospital we were all home (because Lindsey is excessively resilient and strong willed). Anellah and Capper are in love, Anellah especially is extremely enamored and concerned with "Baby Sister's" every need and desire.

Our Family of Happy and Healthy Monsters
And since you all want a video of a baby doing nothing....here you go!


Tuesday, July 15, 2014

Home Already!

The surgery went extremely smoothly and I was surprised to discover we didn't have to stay overnight! In fact, we were home for the afternoon and I even took a nap. In fact, everyone in the family except the surgery patient took a nap today. Anellah and I came home to discover this.

Waking up from anesthesia was hard and scary for Anellah but the nurses were able to give her morphine to sedate her again and she woke up calm the second time around. Whereas the first time Anellah was screaming that she wanted to go home and prying at her IV to remove it, when she woke up the second time she said she wanted to stay in the hospital and would not part with her IV. I had to bribe her to let the nurse take the IV out by telling her she couldn't ride in a wheelchair until it was removed.

We had talked about the bandage she would have on her head but, since the procedure was done by a plastic surgeon who is pretty concerned about aesthetics, she doesn't even have one!! He said he didn't want to wrap her whole head so just didn't put a bandage on at all. Instead the incision and sutures are covered with clear glue called Dermabond.

Upon returning home Anellah made sure I remembered my promises that people who have surgery get to eat lots of special treats and watch TV as much as they want. First request was rainbow pancakes followed by a popsicle.
Kicked back playing LeapPad in between TV shows
She seemed to feel well most of the day once home though she did complain of some pain in the early evening. Ibuprofen did the trick and she is back to herself now pretending to make a nest out of blankets and telling me she is, "a girl named Tom."
Time for a tea party!






Surgery Green Light!

Looking at my posts it is strange to think that my biggest concern before surgeries is that they will actually happen. I'm becoming more and more convinced that anyone with a medically complex child can relate to this stress but I assume looking at it from a typical parents perspective, it seems a bit superficial. Don't I care about how the surgery goes? Don't I care about recovery? Yes, I do, but ironically those factors feel a little more predictable to me.


Despite arriving at the hospital before 6:00am just to run around to multiple locations since nobody seemed to know what we were supposed to be doing (remember, nothing is straight forward when it comes to Anellah's medical care) Anellah is finally in surgery as I type.

As I mentioned on July 5th, this should be a relatively simple procedure. Just a small incision on her scalp, removal of a titanium plate (I said screw before but that was wrong), and stitch back up. I was under the impression she would not be staying overnight although last week at her pre-op appointments I was told she would be. I'll know soon which is true!

Anellah's hematologist (blood doctor) has been wanting to do a study of her bone marrow to ensure that her low blood component levels are, as we assume, related to her liver rather than a problem with production. It wasn't urgent enough to warrant its own anesthesia so we were able to add this quick procedure on to today's schedule. I am very thankful her hematologist brought this up yesterday and although this last minute addition was part of the reason we had to wait an extra hour before going to the operating room, waiting an hour is definitely better than another hospital admission for this simple test.
In preparation for surgery we bought a couple extra LeapPad games.

So now let's get to the good stuff. Anellah, despite all of our running back and forth, has been in a great mood which makes everything 50 times easier! She hustled from place to place and kept saying, "I'm ready for my poke!" when we were trying to get to the lab to get her blood drawn this morning. She has her special bunny with her and performed all sorts of tests on bunny this morning while we were waiting in the pre-op area. You will be happy to know that bunny's blood pressure, temperature, and oxygen level are all within normal limits. :) Also Bunny did not cry when she had her poke. When it was time to head to the Operating Room Anellah pranced right in with her bunny in her arm saying hello to the doctors and nurses.
Bunny's turn to be the patient!
And while Anellah and I are here, Capper is driving a ferry through San Francisco Bay.

Monday, July 14, 2014

Surgery Tomorrow

It appears we are still on track for surgery tomorrow. I did find out at our pre-op appointments last Thursday that Anellah will be staying overnight in the hospital so that extends the entire surgery process a bit, however I'm just glad we haven't hit any roadblocks yet.

Insurance authorization is in place, pre-op appointments are completed, specific orders from specialists are obtained, baby girl seems to be content to stay in utero for a bit longer, and NOBODY IN OUR FAMILY HAS A COLD! It doesn't seem like having a cold is a very big deal and normally colds don't really slow us down but when you are preparing for pediatric surgery just slight sniffles can send everything to a screeching halt.

Thank you for keeping us in your thoughts and prayers. I will update you tomorrow after the procedure to let you know how it goes.

Thursday, July 10, 2014

Surgery In 5 Days

I have to start by saying that I had a massage today! It was glorious! We spent the morning preparing for Anellah's surgery then after a quick car-nap (for Capper, not myself) I was able to meet up with a friend who watched the kids for me while I went to a massage appointment. I had had what felt like never-ending "fails" in the morning (forgot my wallet, dumped a whole water bottle in my purse, spilled my smoothie down my shirt, etc. etc.) so some alone time was definitely nice!

Although it took a bit of stubbornness on my part and I'm sure some grace on God's part; I was able to schedule all of Anellah's pre-op appointments for today which was a relief! The surgeon wanted Anellah to see her pediatrician in preparation for the surgery but unfortunately she is out of town until the end of the month. We were able to see another doctor and as long as things continue to come together (insurance authorizations, she doesn't get sick, and the anesthesiologists don't have any last minute concerns about her abnormal bloodwork) then we will be able to move forward with the surgery! The surgery shouldn't last more than an hour and she will likely stay overnight to be monitored.

We have reserved a moving truck and movers to load the truck for us. Soon we will reserve movers for the unloading, we just have to figure out where exactly the unloading will take place as we don't have a place to live yet. We also don't have a start date for Daniel's job and unfortunately the Security Clearance process has been delayed due to the shipping company losing his documents which were supposed to be overnighted. We're trusting that God knows what he is doing as far as timing, but even if Daniel is unable to begin work in mid-September the kids and I will still move the end of August so that Anellah can start school on time.

I haven't worked much on the transfer of medical care/insurances pieces yet but it is helpful that the surgery is taking place this month and her one appointment which was scheduled for August has been changed to July so this means we can have August be the month in which she is "uninsured."

Capper and Anellah continue to roll with the punches whether that means spending the day at home all day (yesterday) or getting up early to spend a long day in waiting rooms and with doctors (today). They are full of energy and joy and LOVE spending time together. In the morning Capper gets up before Anellah and after being up for a bit always asks, "Can I wake 'Nellah up now?" When Capper takes his afternoon nap Anellah will watch her Netflix show (if she earned one) and as soon as it is over asks, "Is it time for me to wake up Capper?" If anyone else goes to get him she is pretty disappointed. 

Saturday, July 5, 2014

Where to start...



A few weeks ago I posted this photo on Facebook...or was it only last week? Needless to say, we have a lot going on around this house.

The camping trip has happened, it was PERFECT! I'll write a post about that soon. It deserves its own space.
S'mores!!
We found out in early June that Daniel was accepted for a position in Seattle working for the Department of State. He has been looking for a job in the Seattle area for a few years now and finally found one. I cannot say it is the timing we would have chosen however my timing is rarely the same as God's timing.

Currently we are waiting for an "official" offer for Daniel's job as he was given an offer contingent on his security clearance being approved. He currently has a security clearance however his new employer (Department of State) is required to run their own. Since we don't have an official start date, we put the pieces together and assume the start date will be sometime in September. School in our new district starts on September 8th for Kindergarteners (Kindergarteners get an extra week of summer which is great for us this year!!) so we will move the end of August. This will give Anellah a few days to adjust to a new place before she starts school. We have an INCREDIBLE support network here in California. Leaving is exciting but very bittersweet.

Backyard picnic with some of our fabulous California friends
We are looking forward to continuing to observe how God fits all the pieces of this move together with everything else already on our plate. We have friends who are going to buy our house which will take the majority of the stress out of that process! The day before I contacted the couple regarding buying the house, they were in escrow for another house but pulled out. Coincidence? I don't think so.

Sewer lateral being replaced, a requirement if selling your house here
Baby girl is due the end of this month, she won't be having a perfect nursery and rather than buying special new things for her we are actually getting RID of baby items from when Capper was born. But she will be loved and she will know she is special. Capper and Anellah are beyond excited to meet her and talk about her every day. If you ask them what her name is, it is Elizabeth. Daniel and I have yet to confirm.
Both are excited about sister's carseat being added to the van so they are close enough to each other to hold hands
Daniel has been completing his master's degree and will be completely finished with his last class on August 6th. I forgot to include this one in the chalkboard picture. :)

Maybe Daniel will have more time for naps now
So in the midst of all these life changes, we also found out two days ago that Anellah needs to have another surgery. It will just be a quick procedure related to the cranial surgery she had a few years ago. One of the titanium screws that was used is sticking out and causing irritation. We've waited a year in the hope that it would resolve by itself but it has not therefore must be removed. We are tentatively scheduled for that surgery on July 15th.

I'm sure just by reading this post you have plenty of ideas on how to pray for us but if you'd like some specifics I will list some areas we would appreciate prayers here:

-That the kids would continue to be champs and deal well with all of these transitions. They've already started to watch their toys disappear and we are talking daily about moving.
-That the logistics related to Anellah's surgery would work themselves out easily (pre-authorizations, pre-surgery appointments, the surgery itself, follow up appointments)
-That I would be able to orchestrate changing Anellah's medical care somewhat seamlessly. Thankfully we will be close enough to Seattle Childrens' Hospital to have her seen by specialists there and most of her providers here know someone at that facility but we need to find an exceptional pediatrician who can hold all the pieces of her care together and who will coordinate with all the specialists. Moving from her current pediatrician will be very hard!
-That medical coverage will be transferred easily. Anellah's primary insurance is Medicaid, this will continue in Washington State, however, there is at least a one-month lag time. I need to somehow have enough of all of her medications to be able to get through at least one month (likely two months since getting set up with a new pharmacy takes some time when prescriptions and durable medical equipment are complex).
-That everything will go smoothly with Baby Girl's birth and that she will be healthy.
-That we will find a place to live. Construction on our home in Washington has not started yet, we are STILL in the permitting process.
-That packing our house will go smoothly and we will be able to fit everything into a moving truck!