Back to the Blog

Hello my faithful blog readers! I have been absent for far too long, as I've heard from many of you. I would like to point out that Sarah has been asking me to do a blog post for the better part of a month and I am finally doing it. I've been trying to figure out why I haven't been able to make myself write a post and my best guess (self Psycho-analysis) is that I've processed so much over the past year that a defense mechanism of emotional isolation reared its head and made me hold my feelings closer than usual. This is just a rough guess though...maybe I was just lazy. But whatever the reason, here I am to wow you with my awesome Englishing skills.

One other thing: I don't remember what was included in past posts, what needs updating, what you do and don't know so I'll just dump without reading back through old posts and hope it all makes sense. Deal?

First off, Brinley had a happy birthday on April 23rd! Yes, our little girl is a 1 year old! Praise and thanks to our heavenly Father for getting Brinley through a whole year; it was not a sure thing near the beginning as we all know. We had an awesome time celebrating her birthday with about 120 of you at our church on May 2nd! Thank you so much to everyone that was able to come and for the incredible generosity in the gifts. I'm happy to report that we have plenty for the planned swingset and I will be ordering it within the next couple days. Then it will be manual labor time getting the yard ready for construction. Should be fun! I know many of you were busy and couldn't make it to the party and we certainly missed you. We love you too of course!

Now, the big picture at a family level. We're doing pretty great considering what we've been through over the past year. God has certainly brought us a long way in some key areas. For me, one of those is how I handle stress. I am finally learning how to follow what seemed a pretty tall order before Brinley came along:

Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God; and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus.

-Philippians 4:6-7

Most of us will probably agree it is not an easy thing to give up being anxious about stuff. Stuff is hard. Stuff is really hard at times. What we have seen as a family is this: God. Can. Handle. It. If you're going through something tough right now, take this to heart. God doesn't sit around wracking his brain to think of some solution to your problem. He doesn't forget you. You didn't slip through the cracks. It may sound trite but He has a plan for you. Read through Romans 8 sometime; great stuff in there. He has a plan for Brinley and so far it's been awesome. We've gotten to know some awesome people who we may never have met otherwise; we've been blessed by people we've known all our lives, by some we barely know, even some we've never met but who heard about Brinley and just wanted to help out however they could.

Speaking of Brinley, she's doing great! 

• She is getting stronger and stronger and slowly but surely approaching the crawling stage! 
• She now has 2 teeth partially in after a good couple months of teething discomfort. 
• She is still off her vent completely and it's hard to even envision a reason why she would ever be back on it. 
• We brought her to an ophthalmologist and he thinks the nystagmus will always be there to some extent so pray for him to be wrong and that it will indeed go away 100%. He also gave us a prescription to get Brin glasses which we will be doing soon. She has decent mid-range vision but wasn't really tracking things across the room so hopefully they will help her out somewhat. Don't worry, I'll post a picture of her in the glasses when we get them. 
• We are in the planning stages of moving Brin to a blended food diet to support and replace her current formula diet.
• She loves splashing in the kiddie pool.

It's getting late and I could probably just keep going but I hope to do more of these soon so it is not so long between posts. I may do a video post for my next one, guest-starring the whole family if they'll cooperate. It will be a busy but enjoyable summer. My little brother is getting married in a couple months! Woot woot! Also, 2 of my cousins and 1 of Sarah's. So a wedding a month for May-August. Sarah's cousin is getting married in Colorado and I am planning on sending her out there. She deserves a few days away relaxing and spending time with family so I'll probably need some volunteers to help me not go bat-crazy having 4 nutty little girls to watch alone.

I saw Avengers 2 and really enjoyed it. I tried to watch the 3rd Hobbit movie and it's like force-feeding myself a vegetable I loath. Sorry Peter Jackson. I guess you tried. The only way you could get back in my good graces would be to go back and film scenes adding Tom Bombadil into Lord of the Rings.

I'm starting to get a little random so farewell until next time and thanks for reading! 

Crazy Times

The stomach bug. I know it's running rampant across the country and the past few weeks it was our turn. Life is usually busy with a family of 6. If you add on Brinley's little "extras" this is truly a hopping house! Well, all six of us had our turn with this bug with varying degrees of fever, vomiting and such. It was crazy. Cleaning up after it was lovely. That being said there were a few great things about the past few weeks as well.....I give you

Cutest baby ever

She loves books! 

(Her SEIT therapist started her with a book that had mirrors 

on every page, transitioned to touch/feel books and now loves them all!)

This little punk was reaching for Aunt Liv and kicking me until I handed her over ;)

She also enjoyed whacking her littlest cousin whom we cannot wait to meet!

Brin is going to be as big as GG soon

(This was also her St Patty's day outfit. My lil leprechaun)

Sarah's in heaven, surrounded by babies

Aubs was tasting Brin's saliva- now that is love!

Cousin time with Uncle Dan

Cailyn lost her first tooth

Snug as a bug in a rug

First mani, thanks to Nurse J

All 4 of my girls playing together <3

Peter and I got away together- two nights, three days!

Cornerstone Victorian B&B, highly recommended

Prayer points- 

*Continued mouth/tongue growth, development, strengthening. We are seeing more something in there these days so miss B's hard work is paying off! We are trying to "paci break" her (have it on more than it's of) so that she realizes her voice belongs to her. Hopefully this will help her start to verbalize.

*Now that she's sitting up we're starting to work on transition positions to work our way to crawling.

*Health! It has been a long, cold winter and I think we are all sick of being sick!

*I finally got an appointment scheduled for the ophthalmologist. The eye movements are still going on, though less often. Brinley does have a bit of a lazy eye so we think that isn't helping anything. Please pray for a complete healing of the neural pathways, muscles, etc.

Thank you all for your prayers and love. We are excited to thank you and celebrate the life of our miracle baby on May 2! Here is the party information once again. We have started getting RSVP's but would love to hear from more of you. Please spread the word and feel welcome!

When: Saturday, May 2, 2015 from 2-5pm
Where: Delmar Full Gospel Church
             282 Elsmere Ave, Delmar, NY 12054
RSVP: Feel free to stop by even if you do not RSVP but if you could, I will be able to plan appropriately (sarajofina@gmail.com). Just give me a number of people attending.

If you are reading this, you are invited. If you know someone who has been praying for us, they are invited. If you are a therapist, Dr, nurse, etc and have worked with Brinley you are invited! We are going with an open house format for the party. Appetizers and desserts will be served. Please note "Happy Birthday" will occur at or around 3:30pm. Weather permitting we will have some lawn games and such as well.

We have already had a few people asking about gift ideas for Brinley's big day. As per Brin's physical therapists suggestion we have started saving towards a swingset for the backyard. Quite frankly this is something we would all benefit from, but I can't wait to see Brin in a swing and sliding down a slide- how fun! If you are interested in chipping in that would be great. Donations to our local NICU would also be appreciated if you prefer.

You Are Invited!

Can you even believe that "little Brin" is already 10 months old?! It has been quite a year and we could not have done it as well without all of your prayers, love, and practical support. We want to show all of you our appreciation and celebrate the life of Brinley, so what better way than to PARTY!

When: Saturday, May 2, 2015 from 2-5pm
Where: Delmar Full Gospel Church
             282 Elsmere Ave, Delmar, NY 12054
RSVP: Feel free to stop by even if you do not RSVP but if you could, I will be able to plan appropriately (sarajofina@gmail.com). Just give me a number of people attending.

If you are reading this, you are invited. If you know someone who has been praying for us, they are invited. If you are a therapist, Dr, nurse, etc and have worked with Brinley you are invited! We are going with an open house format for the party. Appetizers and desserts will be served. Please note "Happy Birthday" will occur at or around 3:30pm. Weather permitting we will have some lawn games and such as well.

We have already had a few people asking about gift ideas for Brinley's big day. As per Brin's physical therapists suggestion we have started saving towards a swingset for the backyard. Quite frankly this is something we would all benefit from, but I can't wait to see Brin in a swing and sliding down a slide- how fun! If you are interested in chipping in that would be great. Donations to our local NICU would also be appreciated if you prefer.

So, how is Brinley doing? Awesome! She has hit the 22 lb mark so if secretion management becomes a problem again botox is now an option. She is starting to "remember" that she has feet and can stand on them, so that is good. She is really starting to get faster with her reaction time and that makes it easier for her to play and interact with people too. She is such a joy!

This past week Brinley's physical therapist was on vacation so we used that time slot to go to a mommy and me music class (check out Redemption Dance Institute if you are interested). I think banging on the drum was her favorite, though she did get into dancing to "Who Let the Dogs Out" as well. Talk about a throw-back!

Oh, you know, just melting Nea-Nea's heart (this is Brin's special ed therapist)

 Just one of the grandbabies now (she's starting to be a total attention hog!)

Can you tell who is boss? 

The slide is even part of PT

Raina holding Brin's hand during her monthly RSV shot. Alessa licking her?

 Little girl. Big bed

Brinley came with mommy to ballet class to help plan this year's recital

Some of our favorite MKs came to visit this week. We had a hair salon, store, puppet shows, hide and seek, snuggles and so much more! Shout out to all of Brinley's Southeastern University fans :)

Why can't I just eat real food?!

 9 full months later, the stroller drama continues....she obviously needs sooo much "support"

Two of my favorite people ever 

Finally, a picture of Brinley's new toes! Dr A did a fantastic job and it is healing very well.

Rockin' It!

I am not quite sure where to even begin but, Brin is doing incredible!
We had so many people bless us after surgery. Nurses working extra shifts, nurse M stopping by with belated Christmas presents and donuts ;) Family, church family with meals- thank you all so very much!

-Brinley's toes are healing up very well (I have decided not to include pictures yet, but you can ask for some if you're a "blood n guts" sort of person.). She has her second post-op appointment next Wednesday and hopefully we will get the all-clear to get her in regular footwear. All that's left now are a few scabs and shiny patches of new skin.

She fell asleep like this on the way home from the hospital

Picking the stuffing out of her bandanges

Dressing change (1x/day)

-We finally made it back to church and even a superbowl party! Then everyone got sick. Raina ended up with strep. Alessa had a fever, then was fine and now is a super runny nose. Brinley and I got an upper respiratory thing (of course right when nurse J was on vacation in sunny Florida!). The plus side is that we have an awesome pediatrician and her nurse "S" made a home visit to drop off a nebulizer. The neb with albuterol helped tremendously and we still have the oxygen compressor, so we were able to keep Brin out of the hospital! She still isn't 100% so feel free to pray for a complete recovery. We're also on a strep watch until Tuesday to see if anybody else will get it. Two of our nurses have caught the bug already...

-Speech therapy is going. It's a slow process but is becoming more enjoyable for little "Twinkle Toes" as nurse C calls her.

-Special Education (or play therapy) is going great! Even two weeks ago the therapist would frequently have to distract Brinley from looking at her hands to try to get her to play with the toys, but the past few sessions she has not had to redirect her at all! The kid LOVES to play with toys now.

Reaching/pulling with just one hand supporting her sit

-Brin is sitting on my lap helping dictate this post, just so you know!

-Physical therapy is going very well. She has made so many strides the last week or two. K left yesterday's session ecstatic with her progress! We're working on sitting while playing (officially called an active sit) and she can currently sit while supporting herself with one arm and can play with the other one. So much fun! K- Brin's PT also teaches pediatric PT at a local college. Two weeks ago the three big girls went in to be models and help the students learn how to do evaluations. They had so much fun and they earned their first paychecks! This week was Brinley's turn in the medically fragile portion. She rocked it out and it was fun to see the students grow in confidence and have a safe place to ask questions and really check out the medical stuff (trach, g-tube site, oximeter.). I just love the fact that they don't have to walk into their first evaluation having never seen a trach, held or positioned a child, etc. We felt blessed to be part of their training! Today, while we were there K hooked Brin up to this harness (she looked like she could jump out a plane in it) and put her on a mini treadmill. The idea is that once they feel the ground move under their feet the reflexes to walk will kick in. Brin did a little bit on her own and even jumped with both feet which looked very frog-like and was thoroughly entertaining!

Brin sort of loved this student...I had never seen her flirt before!

"She works out!"

-Myofascial therapy has slowed down just because of surgery and sickness but we will be heading back tomorrow. At her last session E worked on circulation and alignment in Brinley's legs in hopes of helping the toes heal more quickly. The next day we noticed that the crease in the back of her head was much shallower. Thus proving that everything is connected!

-Family life is great. While there are definitely ups and downs we feel absolutely blessed to be Cailyn, Raina, Alessa and Brinley's mom and dad. Some day we will sleep again. Some day there will be sunshine, but until then we have peppermint oil, coffee, TV, books and wrestling matches.

Cailyn reading Cat In The Hat to baby sis

Decade day at school 80's girl

Daddy and some of his women

Bunny from nurse M and the NICU days, not sure whose cheeks are bigger!

Not sure why we're green?!

One day I hope to post a more personal/emotional piece, but this month has been so insane that this post is long enough! There are cute video clips and such that I just don't have the time to deal with tonight but I do hope that you have enjoyed seeing how your prayers have affected our little Brinley and her family. Please keep them coming! God's peace and presence in our lives has been what has not only made us survive this whirlwind, but honestly come to thrive as well. We wouldn't trade our little Brinley Noel for the world. God bless you all! Goodnight.