I had a moment and thought I’d compile several of the pictures from Rebecca’s ordeal into a smilebox creation. My goal will eventually put together a book for her but that will come later after her surgery and therapy starts to slow down.
I hope you enjoy.
Jamie
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| Scrapbook customized with Smilebox |
Well, today it is April 9th. It has been two months now since we almost lost Rebecca…hard to believe. Even though she turned 1 on Feb 24th, it is almost like she has a new birthday, 2 months ago today.
She is progressing really well, although she is teething really bad right now. Unfortunately with her gums hurting, she is having a hard time eating again. I am praying she gets through this without losing any weight. 🙂
She is having a lot of fun these days though. Crawling around and playing more. We are still working on getting her to pull herself up and stand. Her right foot is doing better but her left foot is being a bit stubborn, curving under. We have a meeting with the Children’s Development Center at the end of the month to discus a plan of action and schedule for in home therapy.
As always, thank you for all your prayers. God is so great!
Here are some recent photos. 🙂
Jamie
That seems to be life these days, one appointment after another. That and phone calls to schedule more appointments or pay for the appointments we already went to. 🙂 These are the fun days.
Wow, it has been awhile since my last post and for that, I apologize. We have met with our dietitian twice now and she is really nice. We have modified Rebecca’s diet from a 50/50 mix of formula/pediasure to only pediasure. We should only have to continue her midnight feedings for another month or two. Yay. She is continuing to gain weight (this week she weighed in at 17 lbs. 14.5 oz.) and we will now go a month between weigh-ins.
We had our assessment with the Benton-Franklin 0-3 year program and she was approved based upon her scores and need of therapy. She will be able to have Speech and OT at home. Everyone we have met there has been so nice and it is great to know that this care exists.
This week is spring break so we only have 2 appointments for Rebecca. What we don’t have for her, we make up for with us and the other kids. Caleb has his follow up on the tubes in his ears. Couple chiropractor appointments, and the list goes on.
We did meet with the children’s pastor again to discuss Kimberly. We have had some difficulties with her behavior for some time and he has been extremely helpful for our family. She has been recently been diagnosed ADHD and ODD (oppositional defiance) as well as being allergic to dairy, wheat, eggs, and peanuts. It has been a complete overhaul for our family but one we are working through with God’s help.
As you can imagine, we are dragging. So for us, we were prescribed Self Care. We need to do at least one thing a day that makes us smile, go on a date (whether dinner and a movie or just out for a walk) once a week, and one weekend a month just getaway. 🙂 It sounds like some will be easier than others but we are going to work towards doing so. We need to be refreshed so we can take care of them.
Thank you for reading my babbling (which Rebecca is starting to do and the therapists are happy about). I will try to post more frequently so that it is not a long novel next time.
God bless and thank you for your continued prayers! Happy April 1st.
Jamie
My grandparents were in a car accident the other day in Colville. My grandpa didn’t see a car and pulled onto the highway in front of it. They were T-boned and their car was totaled but the people in the other car were okay and my grandparents are recovering very well, praise the Lord.
My grandma has a broken rib and finger, cracked pelvis, bruised kidney, and she is sore from the air bag. She has been up to walk a couple times, and on Monday will go to a nursing home (where my aunt and cousin work) for a couple weeks before returning home.
My grandpa had a broken hip and was taken to Spokane for surgery. When he got there, he had some bleeding on his brain and an air pocket on his lung. He was taken to ICU where his heart rate was extremely high for a couple hours. However, his heart rate came back down, he was able to have his surgery to repair his hip, and has since been taken out of ICU. I am not sure when he be released to go home yet.
Their recovery has been amazing. Thank you to those of you who have been praying for them. Please continue to keep them in your prayers as they move forward.
God is so great!
Jamie
This week has been a long week, and it is only half over.
Actually, last week we met with someone from the Benton-Franklin 0-3 year program to talk about Rebecca. She asked questions about Rebecca and I answered them. When we were done, she added up all the numbers and Rebecca was in the grey for one category and behind in the rest. She was going to take the information with her and discuss the results in a meeting. Got a call from her today saying that with Rebecca’s scores, she is in for in-home therapy of sorts. (I am typing this upstairs right now while putting the kids to bed and do not have my notes so some info (names of program,etc) might be a little off). Anyways, it is in the works for that.
Also last Friday, Rebecca had an ultrasound and met with the urologist, Dr. Starr. The fluid in her kidneys is getting better so when the doctor comes back in May, we will repeat the ultrasound and see her again. We may need to do another Mag3 test up in Spokane in 3 months to see how long it takes her kidneys/bladder to drain but we will see in May.
Back to this week. Yesterday we only had OT. (our PT was out sick) Rebecca did great. Using more of her muscles and didn’t fuss as much being moved here and there. The OT was happy with her progress.
Today we met for Speech. Rebecca played with the toys and Katie (ST) finished her evaluation. She has pleased with Rebecca’s progress as well and really liked that she was babbling a lot more.
I bought Rebecca an electric toothbrush as they recommended and it has been funny to watch her. She does not like it by her face but today she let it move against her tongue. Her expression was classic and she tried to wipe her tongue off (on my hand) afterwards. 🙂
Tomorrow we meet with the dietician for the first time. She will be coming to the house. Not quite sure what to expect there other than to go over her feedings and see if she needs to increase her calories even more.
As I’ve mentioned before, THANK YOU so much for your continued prayers. They are so appreciated! We did get our thank you cards in and aim working to get them out.
More updates to come.
Jamie
In order to avoid this being a long book and to give you insight to what all happened to Rebecca, here are the “Cliff Notes” version. 🙂 …it may still be a little long; it has been a long month.
Everything happened so fast and I know I am not “catching” everything but this is the highlights.
Tuesday, February 8, 2011 started off just like any other day. It was an extremely busy day and we were running behind.
Rebecca woke up groggy but I assumed it was because she hadn’t woke up completely yet. When I picked her up from Trisha’s house (our friend, neighbor, and babysitter during school hours) around noon, Trisha told me that Rebecca had not been her usual self and a little lethargic. She had eaten part of a sticker but thrown it up. I carried her home and her head was a little floppy, like when she was newborn and I was a little concerned. However, when we got in the house, she seemed to be better and I thought maybe it was just how I was holding her. I nursed her and laid her down for a nap around 1/1:30, keeping an eye on her. Then I put Caleb down for his nap knowing he was getting a short nap with our schedule as it was.
At 3, I woke the kids and put them straight in the car to go get Dustin from work. He had a dentist appointment at 4 and we had a field trip at the fire station scheduled for when I dropped Dustin off. We got to the fire station shortly after 4 and all the kids had fun. Rebecca seemed alert and feeling well. She was not lethargic and was holding her head up properly. I didn’t think there was any further issue.
We left the fire station and picked Dustin up. I took him and the kids home and I headed back to the dentist for my own 6 pm appointment. While I was gone, Dustin fed the kids and Rebecca ate a full container of squash. (This was impressive because over the last few months she had not been wanting to eat much.) When I got home around 7:45/8, Dustin and the kids were upstairs. Rebecca didn’t look very well to me; she looked very pale and her mouth had a bluish tinge around it. Her breathing sounded a little raspy and I was a little scared. I tried to nurse her twice and both times she threw up all over. Her lips would return to normal coloring once she threw up. I was very concerned but we’d had issues with Kimberly in the past throwing up and taken her to ER only to be sent back home so Dustin recommended we wait. We decided I would call the doctor first thing in the morning to get her in, if she didn’t get worse during the night.
I put her to bed continuing to check on her and called Trisha to let her know what was happening and inform her that Caleb would not be at school the next day. I asked her if she would watch the older kids for me while I took Rebecca in. I went back into Rebecca’s room and held her hand while watching her. I left the room at 11 to watch a show with Dustin. I went back in at midnight to check on her and she was sleeping peacefully.
The next morning, Wednesday, February 9th, Kimberly and Caleb woke me up early but Rebecca hadn’t woke up yet. It was already getting to be a busy morning. At 8 I called the doctor’s office to make sure that I could get her in, as Wednesdays are their half days. They were able to schedule us at 9:20 which meant I had to leave by 8:50. I knew I had 40 minutes to say goodbye to Dustin, get the kids fed, dressed, out the door to Trisha’s, and oh, I still had to wake up Rebecca. Yikes! So I had Kimberly help get clothes, and I went in to get Rebecca. She didn’t look any better, pale, bluish tinge, and cold. I brought her downstairs and started nursing her and called Trisha to let her know the time I was going to send the kids over. While I was nursing her, she started throwing up again. I rushed her to the bathroom.
I hurried to get the kids next door and rushed Rebecca to the doctor’s office, with so many thoughts running through my head. When I got to the doctor’s, it seemed very long. They checked us in. She weighed 13 lbs, 3 oz. (a 2 lb drop from December) and was 94.9 degrees. While I was by myself (the nurse had already left) and I was waiting for the doctor, Rebecca started throwing up again, unfortunately she had nothing in her body to throw up. She was very weak, her eyes were sunken, and I was VERY scared. The nurse was able to help a bit.
When the doctor came in, I was in tears. He said he was going to send me to the hospital but wanted to look at her first. Upon checking her, he said she was dehydrated and was going to call in to the hospital so we could go right in through ER without delay.
I rushed her to ER as fast as I could. It was 9 blocks away but it must have been lunch break at the school because the high schoolers were walking across the street. I called Dustin’s parents to have someone meet me there; I was not able to be by myself any longer. (Dustin was at work.)
When I got to ER, I ran into the building with her. They took me right back and everything was incredibly crazy. One nurse was asking me questions, another nurse was getting an oxygen mask, I was taking her out of the car seat and then held the O2 mask to her face. Soon there were more people in the room. A couple doctors came in and were working very fast. The things that were taking place (which seemed all at the same time) were: getting XRay of her chest, trying to get an IV started, pulling a blood draw, taking a rectal temperature (which read 92 degrees), and placing a catheter in her. They were doing all of this to her and she did not twitch or move at all.
Soon there were about 12 or more people in there, including the chaplain and Dustin’s mom, Donna, pumping her with antibiotics, running tests, trying to get her warm and responsive, the list goes on. I stood with Donna and the chaplain at the foot of the bed watching, crying, praying, answering questions. At one point the doctor came over to tell me they were going to intubate her (place a tube down her throat to help her breath). Another time they were getting ready to use the defibrillator her little body because of her heart rate. When I heard them call it, I just cried out loud for God to save her. Immediately afterwards I heard someone yell, “wait”. Apparently she began to struggle with the tube which caused her heart rate to go back up and they did not have to use either. At one point she finally cried out and everyone in the room started clapping.
After that, the doctors mentioned that they were going to send her to Spokane and I called Dustin to have him leave work and get to the hospital. They continued to stabilize her and get her ready for MedStar to transport her. Dustin and then his dad showed up and we decided I would fly with Rebecca, Dustin would follow in the van, and his parents would watch the other two (who were still at Trisha’s).
When MedStar arrived, we rode via ambulance to the airport, then took a plane to Spokane airport, then rode via ambulance to the hospital. They took us directly to PICU (pediatric intensive care unit), where my family was waiting in the waiting room. They hooked her up to different monitors, tried to get more lines into her. I spoke with the doctor about what had happened and Dustin showed up a little later. Her urine was showing an extreme urinary tract infection (UTI), her sodium was depleted, she was very dehydrated. They performed an EKG and ultrasound of her kidneys (she has fluid in her left kidney). They did not know what was wrong with her or the main cause and could not do any major testing until she was hydrated and starting to get better. We felt like we were on an episode of House 🙂
We stayed in a hotel the first night but they were able to get us into a Ronald McDonald room on the floor above Rebecca the next few nights. She stayed in PICU for 4 days. Therapists came in and worked with her, discovering some sensory issues and food aversions (reasons for the difficult eating the past few months). We were transferred to immediate care on Saturday, February 12th when she began to progress. (It is also the day Kimberly and Caleb came to visit so they were able to see her.) Honestly, I do not remember what it is we were waiting on to get out of PICU (blood work, eating, fluids, etc) it is kind of a blur. Once she was moved out of PICU, we stayed in her room with her.
We were on Intermediate for a couple days until the hospital filled up rather quickly with highly contagious patients. At that point we were transfered down to their overflow area (their previous children’s area). It was so nice down there. The room was very large, they had multiple playrooms for the kids (one for the younger ones and another for the teens). As she gained her strength, they began running tests on her kidneys. We worked with a dietitian, PT, OT, and speech to create a game plan to get her development up and her calorie intake in.
After 8 days, we were able to go home on Thursday, February 17th to begin therapy and care from an out-patient perspective. The days are long, appointments are many, but our baby girl is alive thanks to God. He truly is our Saviour!
Thank  you everyone for all your prayers! They are what keeps us going. God is giving us strength we do not have. We are amazed by everything that happened.
I will continue to keep updates coming as we have them!
Love Jamie
Before I forget another time…Rebecca cut 2 more top teeth 2 days ago. 🙂
It has been very busy around here these days. Many appointments. Rebecca’s therapy is going well. She just started speech and they are still working on her assessment. We are making progress though.
She has begun to fully crawl now. In fact she is getting rather fast. We are working to get her to pull herself up to a standing position. Her feet curl in though so we are trying to work with the muscles so when she stands, her feet go flat. Drinking from a cup is another thing we have worked on.
At yesterdays well-child appointment, she was 17 pounds (which was a 9 ounce gain) YAY!
Today she had her kidney/bladder ultrasound and directly afterwards, we saw the urologist. Her hydronephrosis (sp?) is still there but has gotten better. We will do another ultrasound and appointment when the specialist is down again in May and in about 3 months we will probably repeat the MAG3 test to determine how fast her bladder dispells fluid.
Thank you for all your prayers!
Jamie
Our goal is to get Rebecca’s intake up to 32 ounces per day, feeding her 4-6 ounces every 3-4 hours. Three of her feedings have to include table food where we start with soft/purees/ground food then add crunchier/breadier/solids and finishing with a bottle.
Well, today was a good day for her. A few of her meals today included:
at bible study this morning, she had 6 ounces; at lunchtime she ate a full container of stage 2 gerber food, apples and cherries, along with 1/2 a graham cracker sheet and 7 ounces; she had another 6 ounces for Grandma while I took Kimberly to the doctor; for dinner, she ate beef noodles, olives, applesauce, 4 ounces; and at bedtime she had another 6 ounces (that is 29 ounces)
This is amazing! When we left the hospital, she was having a difficult time taking in 12 ounces in a day. If she hasn’t gained more weight this week, I will be amazed.
She has made such remarkable progress. We have more therapy tomorrow. We meet our speech therapist and continue with PT and OT. I will continue to update everyone on her progress.
Thank you all for your prayers.
Jamie