Yes, this post is way overdue. I apologize. It has something to do with raising four kids and the holidays...So, while this may be "old news," it is so exciting that we still wanted to take the time to share with you all.
About two months ago Nurse J, Alessa, Brinley and I packed up and headed out to our weekly PT appointment. Everything seemed just the same as ever until...we showed up for our appointment the following week. One of the other therapists at the practice asked to talk to me and told me that one of her patients had noticed Brinley in the waiting room and started talking to Nurse J. Long story short, this anonymous person donated $1,000 to our family! I am still flabbergasted by this! It was just what we needed, when we needed it. Financially, it was wonderful because we were just getting our whole-house generator installed (Brinley qualified for a grant to finance the generator and installation) and needed finances to fill the propane tank. Brin hasn't used her ventilator since March- hallelujah!!!! But we needed to purchase a good quality humidifier for her room so she could sleep well/safely at night since she had previously been getting humidification from the tank attached to the vent. Spiritually, we had been getting a little discouraged as Brin was getting very frustrated since she couldn't communicate her needs and we were just getting tired from it all. But God. He knew and He cared, enough to bless our socks off by someone that most of us never even met! All because of our sweet Brinley's beautiful smile! God is so good, and if our anonymous benefactor is seeing this- thank you again!
Only a week or two after the above happened Peter gave the sermon at our local church. He did a fantastic job (I am not biased or anything!). He touched on experiences from the past year and a half and tied it all into a very challenging and encouraging message. If you would like to check it out please feel free, the link is
HERE it's the one titled "For I am Convinced" Oct 25. I don't think there was a dry eye in the place. After he spoke we were very humbled to receive just over $1,000 from various people in our church who just wanted to bless us. God is able to provide. God sees and He cares.
Now for progress...I am going to post slightly less here than usual just to save time- but, I have a fun Christmas/New Years post in the works, so you won't have to wait long for more. Brin is doing so well. Mio PT did a LOT of work in Brinley's mouth and head in October and though it was rough at the time (5 day recovery each time) it was soooo worth it! This whole month I have heard therapist after therapist, after nurse, after friend, after family member notice how much she has changed in the last few weeks.
*She can sign about 15 words and recognizes many more.
*When we work on crawling/walking we can support her on her stomach instead of ribs or hips. This means Brinley is doing more of the work and motor planning as well. We are seriously close to having a crawler! (Too hard to guess exactly when as it just "clicks" sometimes and takes forever other times.)
*She plays this clapping game now where she leads or mimics how many claps you do. It's so fun to interact more!
*Her TVI (vision therapy) only has 2 more sessions then she graduates. C does not think Brin has cortical vision impairment! There may be some dimensional issues but overall Brinley's eyesight seems pretty good!
*Just tonight during speech Brin started making sounds while moving her lower lip (oh the things we get excited about!)! B took time tonight to tell us how she really didn't know what to expect from Brin in the beginning and is just thrilled to see her progressing :) She's working on trying to get Brin to make different sounds "B" and "M" are the current goals. She's also reinforcing ASL (sign language) with her as Brin is really taking well to it. We're looking at starting food JUST to taste. We need to start super slow and see how her swallow is to make sure the risk of aspiration is low. A "therapeutic feed" means that while the vast majority of her nutrition will still come from the g-tube Brin will be able to taste a teaspoon or two. This would be so fun for her!
*We have a pretty large nursing change. Our wonderful nurse H is not going to be working regular hours now as she has a brand new baby! Little Elijah was born on Thanksgiving and we were so excited we ran off to meet him that day! We will miss nurse H but we know where she lives and I am sure we will have lots of playdates :) He even holds his bucky in like Brin <3
Surprisingly Brinley liked him!
(We thought she would be more jealous)
I will not have nurse coverage on mondays until noon, tues and thursday until 3:30. I'm actually excited to try to be mommy to all of my girls more regularly. We'll either fly or sink....time to find out which!
*We're ditching the formula- at last! I found this company called Real Food Blends and it's just that, real food that is nutritionally balanced and pureed to a g-tube friendly consistency. We have been giving her baby food each day to check for food sensitivities and will slowly start to transition her to solely getting real food! This is something I am hugely excited about!
My friends Carol and Anne stopped by for a quick visit all the way from France! I stayed with their family for 3 months when I turned 18. Carol came for our wedding and it was so nice to have them here to meet Brinley! (They had already met the other three girls)
Obligatory apple picking picture
They were a bit on the lazy side
Noses noses every size
I just LOVE this shot with the girls and their three surviving great grandmothers! From left to right Sittou (Peter's Lebanese grandmother, his dad's mom), GG and Great Grandma June (Dad's mom and Mom's mom respectively). We are so blessed to have each one of them and how fun is it that they are friends?!
Happy 7th Birthday Cailyn! This was her present from nurse J. It was stuffed with goodies!
Work in progress
Alessa's masterpiece!
Halloween
Be still my heart
(Snapped this just before Peter pulled them and the tarp to the backyard with his tractor. They love rides!)
Yes, this was crash tested by the best- Alessa. The girls can bring her around the house now! She loves being with sisters.
Story time- Llama Llama Red Pajama, her current favorite book and that is saying something!
Wrestling with Daddy, Brinley's other current favorite activity. She will ask (sign) to wrestle first thing in the morning...and prettymuch right until bedtime.
Raina stealing snuggles with our newest niece, Shiloh
Morning snuggles with Slade are the best
I saw a picture of a cornucopia made with bread a few days before Thanksgiving and just had to try it. Worked great and tasted good!
60 degrees the day after Thanksgiving, yes please!
GG, my parents, siblings and all our spouses and babies!
Can't keep us away from the track for long. We've caught the bug ;)
Brin on I's bike!
Motobaby
