Christmas Review

Oh how I wish I had the time to write of all our joys and struggles and how the Lord provides and sustains. We had a wonderful Christmas, at HOME with our WHOLE family! Last year Graham was in the hospital and we had take out Chinese in the hospital for Christmas dinner. Praise God for allowing us to spend this Christmas together at home.

My (Liz's) parents and brother came and spent Christmas Eve and Christmas Day with us. My mom prepared some delicious meals for us and my brother got a good dose of birth control from being around my three kiddos. We attended Christmas Eve service at our church for the first time and enjoyed that.

After Christmas we traveled to Matt's parents for a couple nights. This was our first time traveling with Graham since he has had the ventilator and gtube. We had no nursing while we were there so we were busy and tired. But it was nice to be there with all of Matt's family. Nothing went catastrophically wrong, we didn't forget any important equipment or meds and we had no equipment failures. Graham did get a few impressive booboos from his cousins. But all in all it was mostly a successful trip.

helping decorate the tree (all fun and games til Ben smashed a glass ball and cut his hand)

Cutest little Santa ever

handprint Christmas tree

handprint reinder antlers

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cooking dinner

feeding Cookie Monster his cookies

gingerbread house - Graham mostly supervised and threw candy on the floor

reading books with daddy

the pantry provides lots of entertainment

Christmas Cookies

Ben's favorite toy for a week - wrapping paper roll

look what Santa brought!

Hallie got a baby doll from each grandmother

Liz's family - brother, Perry

Matt's brother's family - Jason, Joy, Hayes, Titus

Matt's sister's family - Robin, Nathan, Noah, Zachary

Hay ride at Matt's parents' house

all the Laney grandkids

The whole Laney family (a few members are hiding in this pic. oops.)

Home Nursing is a Blessing but It's Not Always Easy

Thanks to the CAP/C program Graham qualifies for a nurse 126 hours a week. Matt and I have arranged our hours such that Monday through Friday we have a nurse 8am to 6pm and then 10pm to 8am. And then Saturday we have a nurse until 1pm and then Saturday night and Sunday night. All the hours we don't have nursing Matt or I need to be with Graham. Graham is fairly stable on the vent but things can get serious real fast for Graham if something happens.

Having a nurse to help care for Graham has been a blessing in many ways because it allows me to go the grocery store, or care for the babies, or take a shower, or travel in the car with Graham. But it is also very difficult to entrust Graham's care to strangers. We have had 20 or more nurses since Graham came home in April. Some of them are very experienced with trachs and vents and others don't have a clue what they are doing. So I have learned that I must evaluate the nurses and not assume they know everything. In addition to having the necessary medical knowledge and experience a nurse needs to be able to get along well with Graham and with Matt and I.

We had a great nurse 4 days a week that recently took another job outside of home health. She adored Graham and he adored her. We are pretty devastated. We have some other good day nurses that are taking over but this other nurse was just such a great fit for our family. No nurse is going to love Graham as much as me or do everything the way I would do it. But I have to run our household and care for the twins too, so I need help. Getting and keeping good nurses is a constant struggle and prayer need for us!

October is for Birthdays

Graham turned 3 last Friday (October 2) and the twins will turn one on October 21. Last Saturday we had a Sesame Street birthday party to celebrate. We invited a few friends and family. We did things easy: bought all decorations at Party City, cupcakes at Harris Teeter, and pizza from Dominos!

We are so so thankful that Graham made it to his 3rd birthday. It has been quite a year for Graham and our family. There were many times we thought we might lose him during those six months at Duke Hospital. But the Lord spared him and we are enjoying every day at home with our whole family. Praise God! On Sunday the teacher at church asked us to close our eyes and envision the most beautiful place we had ever been. My mind oscillated between the Chowan River, where my parents now live and where I spent all my summers growing up, and sitting in Graham's room in the glider rocking him when he is having a hard time going to sleep.

I can't believe Ben and Hallie are almost one! They are such a joy. They are usually in a good mood and smile easily. They love finger foods. They are speedy crawlers. They want to play with whatever big brother is playing with, which often causes trouble. Ben finally has two teeth and Hallie still has none.

Nom. Nom. Nom.

I will start with the biggest and best news first... Graham is eating by mouth! Graham had a swallow study on June 30th and he aced it. He was completely cooperative, letting us strap him in a tiny seat enclosed by an xray machine. He willing took all foods and drinks and swallowed perfectly on all consistencies. He is approved to take WHATEVER he wants by MOUTH!!

The speech pathologist was stunned. She couldn't believe that with Graham's respiratory history and not eating for 6 months that he did so well. She put her hand over the trach on the xray image and said if the picture didn't show the trach we wouldn't be able to tell it was there from his swallow pattern! Graham's home nurse was in tears and I was close. (I don't cry anymore. A 6 month hospital stay for your 2 yr old will do that. It will come back one day.)

We praise God for this milestone. It really is a MIRACLE. If you recall we had him on thickened liquids and pureed foods in feeding therapy last fall. Now after intubation causing some vocal cord paresis and the tracheostomy and not eating anything since January he is swallowing perfectly?!?! God answers prayer!!

This is such a game changer for our whole family. Graham is THRILLED to be eating again. We have not eaten or talked about food in front of Graham for months and now he can sit at the table with everybody else and eat. We are taking it slow with easy to eat foods such as crackers and applesauce. We are trying to get him in the UNC feeding clinic to for help moving forward and guidance on weaning gtube feedings once he is consuming more by mouth. Right now eating is more of a quality of life thing for Graham. The gtube will be around for a good while still and we are ok with that.

Look mom, no vent!
Graham has also been approved by the pulmanologist for 30 minute daily trials off the ventilator! (He still has the trach in his neck but it isn't connected to the vent.)  Graham can breathe well enough on his own for 30 minutes as long as he is playing happily. If he gets anxious or upset then his airways start to collapse and he has to go back on the vent. A small step in the right direction.

Nurses
We have one day nurse four days a week that we absolutely love. She adores Graham and he adores her. It is such a blessing to have somebody that we feel comfortable caring for Graham. We still need more good nurses for nights and other days and the nursing agency is having difficult staffing us. This is a prayer point for us. To have competent compassionate nurses to care for Graham and all of his medical needs.

Books
Graham's biggest interest right now is books. He has learned to sign "books" and is constantly asking for "more books." He loves to sort them, stack them, read them, and point to them for us to name them. He flips through the books and points out similar animals or objects in different books. He has several books in the same series and he can find each one pictured on the back of the other books. He is one smart cookie if you ask me.

Moving
We are planning to close on our new house on July 20 and move on July 25. We are so excited! We can't wait to be in a one-story house. We are starting the packing now.

Twins
Ben and Hallie are 8 months old and they are sitting up on their own. They are rolling and pushing themselves backwards. It's only a matter of time before they are crawling. They are babbling and within days of each other Hallie starting saying "mama" and Ben started saying "dada." It is so sweet to hear them. Maybe it will rub off on big brother one day. Graham enjoys being around the twins. It is such a joy to see them altogether!

Graham's stick. The only thing he could put in his mouth until recently! 

ALL day long.

My babies sitting up!

Riding the train at the mall!

Finally got some pictures showing all of Graham's "hardware." (and his beautiful smile!)

EATING!!!

All my babies eating together! (And our favorite nurse, Amy, in the background.)

No ventilator!

New House! Can't wait to move.

Life at Home

Well Graham has been home a whole month! We are exhausted, busy, and stressed. But we are home, all together, and we are soaking up every minute of it.

Graham's health has been stable. His blood levels are doing fine. His respiratory status is stable even after being off his inhaled antibiotic for 2 weeks. This may be the longest he has been off an antibiotic since October. He is going to the pediatrician weekly for weight checks and check-ups. Graham is gaining about an ounce a day which is great! The more he grows the bigger and stronger his lungs will get. He lost weight last week which thankfully seems to have been a fluke because his weight was back up this week.

He is tolerating his feeds well (no vomiting or pain) so we have increased calories. He is now on Liquid Hope + avocado + coconut oil. We have weaned him off several meds and are hoping to come off more meds soon. He was on several meds for issues relating to his feeding difficulties but all that has been resolved since getting on Liquid Hope. But the doctors don't like to make too many changes at one time, so we are trying to be patient.

The most exciting news is that a Duke speech therapist gave approval for a swallow study. Graham will basically eat and drink substances with barium dye on them so we can see him swallow on xray and see whether or not he can safely swallow without aspirating. The trach in the neck can affect swallowing and his vocal cords are still recovering from being intubated so long last fall through his mouth. Currently the only thing Graham can have is a chew stick dipped in water. He seems to swallow the water fine (no coughing or gagging). We are hopeful he will be allowed to start taking things by mouth again soon. The soonest Duke can get him in for the study is June 30 but I plan to call some other places on Monday to get him in sooner.

Matt and I have left the house at the same time a few times when we have a good nurse and grandparents at home with Graham. We have also taken Graham out a few times (other than to the doctor) to Pullen Park twice, to church for the babies' dedication on Mother's Day, and to the library for toddler story time. We bought a sturdy swing and rigged it to hang the vent on it. It is so thrilling to see Graham get to do some normal little boy things.

Meanwhile, the twins are 7 months old! Hallie is rolling all over the place and Ben is almost sitting up on his own. They are eating three baby food meals a day. Hallie prefers the spoon to the bottle. Hallie is loud and constantly making noise and Ben has a quiet soft voice and pipes up when Hallie gets tired and quiets down. In general Hallie is intense and Ben is laid back. Its so fun to see their little personalities forming!

In other news, we are under contract for a new house! It is a one-story house in North Raleigh. Moving Graham and his equipment up and down the stairs is burdensome. He is napping in the pack n' play in the afternoon downstairs and so we all have to tip toe around. A one-story house would make life much easier! We are excited about the house but there has been a complication with the appraisal coming in way lower than selling price. We are hoping things will work out in our favor and we will still be able to get the house. We are getting a second appraisal this week.

That's most of the news lately. Here are some pics:

Not sure how Ben got Hallie's sock in his mouth!

They love their daddy!

Mother's Day

First time painting. He like it!

Whale rocker at the neighborhood park.

New swing! He LOVES it.

Graham wanted to get in the baby exersaucer. Ha!

Toddler story time at the library.

On the carousel at Pullen Park.

They let us ride twice in a row without having to get off.

And we rode the train! So thankful for handicap accessibility.

First time in the swing.