Four Years Later....

 

Wow. It's been almost four years since Kaiya Dawn and Kaidyn Jamiel entered this world. It has been a long and hard journey but I wouldn't change it. None of it.

Kaidyn is doing great! She is a happy, healthy, almost four year old. She has become as girlie as you can get. Her favorite color is pink and she is not happy in anything other than a skirt (a tutu that twirls is preferred). She is no longer on any type of daily medication and has not had any emergency room visits this year (knock on wood as this year is not over).

She was evaluated for special services with the local school district, but she did not qualify as special needs. Yes! That is correct, this almost four year old who was born at 24 weeks, weighing in a 1lb 3.8oz, who spent 113 days in the NICU, who needed oxygen for 10 months of her life, who had several rounds of steroids that could affect your learning development, did not qualify for special services. Praise God! The school district was shocked that not only did she not qualify, be she was also on target or above in several categories.

So, as she approaches her fourth birthday, (October 29th) I begin to prepare to host a "My Little Pony" themed affair. With cake (which she will not eat but she expects to be present), a birthday tutu (pink of course), and crown for our princess. I thank God daily for all he has done. It is because of no one else but him that Kaidyn is alive and thriving.

This year for Kaiya's fourth heavenly birthday we will be celebrating with our local MEND chapter at Central Park on October 13th from 3pm - 4pm. If you are in the College Station area please feel free to come out and celebrate not only the life of Kaiya but also the lives of those little ones that are no longer with us.

In honor of Kaiya's birthday (Oct. 23rd), I invite my friends to make a donation to the Bryan/College Station M.E.N.D. chapter in her name. This organization has done so much for myself as well as so many other women in our community. Without this organization I don't know how I would have gotten (or continue to get through) those rough months, weeks, and days.

You can make your donation by following this link  http://www.mend.org/support/about-donations.jsp. If you are donating by check please be sure to put that it is in honor of Kaiya Dawn from the BCS chapter in the memo line so that our chapter gets credited for the donation. In the online donation that is a place for this information as well.

I want to thank you all that have been her for me throughout this journey. I never would have imagined the day I found out I was having twins that four years later I would be here. But I thank God for this. Because of it, I have had a testimony to share with so many people. Being able to share my story has been a tremendous blessing for me. It allows me to tell people about Kaiya and how even in her 49 minutes of life, her impact on this world has been great.

I ask for prayer as we continue on life's journey because it is far from over. I welcome the opportunity to share my story about my wonderful twins Kaiya Dawn and Kaidyn Jamiel. You can see the miracle in their birth dates.

Love you all!

Here's to G-Pop!

So sorry for the long period between post. I was reminded on several occasions that I needed to update the blog by KJs Godfather or G-Pop as she calls him. So here you go G-Pop!

KJ has been doing great. Has not had a relapse of pneumonia (yay!). We have seen tremendous growth in here over the past several month. She has grown (straight up only), and seems like grew a shoe size over night. She is talking in full sentences now and even told me she wanted to wear a pink dress to school this morning. She likes to wear dresses and dance like a ballerina. She has hit the terrible twos but we are working on making good choices.

The plan is to put her in gymnastics this summer and take advantage of her increased muscle turn and joy for turning flips.

All in all KJ has just grown up to be a normal two year old. God has just blessed her beyond measure and the expectations of most. What an awesome God we serve!

PS Yes I know...no pictures. I will post some from my phone soon.

Baby Maya

I have posted on several occasions about Baby Maya, KJ's NICU BFF. Here's a little about Maya's story from her mom Kristy!

Its been SO LONG!

Wow, I didn't realize how long it has been since I posted on KJs blog. Time has surely flown by. There have been a few ups and downs since I last posted so I will do my best to update on all but they will probably not be in the order that they occurred, sorry.

KJ has been released from ALL therapy! Praise God! I was (still am) nervous about the ending of her therapy. Her therapist have been a part of our family and a big part in her great success. None wanted to stop seeing her but all said that on there visits they just played...she already knew everything!

KJ has still been battling recurring pneumonia the entire winter season. Just last week she had to go to the ER again with her 3rd cause this season of pneumonia. It was nothing but God that I was able to get an appointment scheduled with her pulmonologist and within a week she has having a CT scan of her lungs and a bronchoscopy. The CT scan showed that her lungs were completely covered with pneumonia (all but an area in her lower left lobe) and her bronchosocpy showed that she has some airways that are not fully opened and that she has some indications of reflux or aspiration in her bronchial tubes.

Treatment: for the pneumonia she has PIC line (long term IV) in her arm so she can receive IV antibiotics for the next few weeks. For the reflux or aspiration she will be started in nexium for reflux and will have a swallow test to see if she is aspirating (if food is getting into her broncial tubes).

Sounds like a lot but after a few rough days KJ is back at daycare, running and jumping around! KJ is truly a fighter and gives me strength everyday. Someone said to me the other day..."Wow, she is such a fighter, she has so much will, she will grow up to do great things!" And I believe God has a wonderful plan for her and this is all just her testimony!

Be blessed!

Birthday and Halloween Pictures

Happy Birthday Kaiya Dawn!

Whew....2yrs

On October 29 KJ turned 2. Boy how time has flown by and how blessed we have been. KJ is doing so great....even better than anyone expected. Thank you all for the prayers and support over the past two years. Through your prayers she was able to beat man's expectations of her and show truly what God can do! We love you all.

The Week Ahead

Just wanted to post a quick update on KJ. This week she will be fitted, hopefully, for braces just to sleep in. We think that she needs the support but don't want to slow her down or frustrate her by making her wear braces during the day. Also, we will be discussing with her ENT on taking her adnoids out. I just don't see this winter going good if we don't. As soon as she gets a hint of sniffles she gets super congested and this time even anitbiotics didn't clear it up. So prayers needed this week! Will update at the end of the week with results.

Learning new things

When I think back to the NICU and being told that KJ would be delayed, all I could do was prepare myself for it. I was more than ready to handle what was to come if we just made it out of the NICU. And here today KJ is doing better than I now I ever expected. She is counting, learning her colors (she may not get the color correct but she will name one lol), singing, dancing, and is an all around silly silly almost two year old. I couldn't have prayed for more if I tried. Matter of fact, I prayed solely to make it out of the NICU and the strength to handle what was to come after.

I will tell anyone the amazing story of KJ because I know without a doubt that it was God that got her through the NICU and to this point. And while KJ grows up daily and learns new lessons, I can't help but wonder how Kaiya would be now. But I know that she is with KJ daily and I am sure what fighting hard for her sister in heaven.

While blog post a farther between now I do hope that while prayers are still being prayed for KJ we don't forget that she did not start this journey alone. Kaiya Dawn will always be an important part in KJs journey.

Walking and Talking

WOW! I had NO idea it had been so long since I posted, I hope there are still people that check. Kaidyn is doing sooooo good. She's walking and talking so much now. She is down to one session a month with all her therapies. She is in a new daycare right now and has just taken off. She is learning so much. She comes home singing songs, drawing, and talking about her day. And best of all she out by 8:30 hahaha ok not the best of all but that does help me :). I will post pics via my phone soon! Love you all for following the blog and thanks for all your prayers!

Family Reunion...

We have had a blast the past week watching KJ walk. She of course does it in her own way and when SHE wants but that's her lol. This weekend was our family reunion. It was so great for the family to see her now. So many were excited to see how well she is doing as well as how big she has gotten. She was seen by a nutrionist Friday who says she is doing great and found she has gained 1.5 lbs in the past month! It is an ever occuring blessing to see her grow learn each and everyday. She is doing great with signing and is starting to talk more and more...she's a mimic-er.

Here She Is!

It Official!

That's right, it's official. Kaidyn Jamiel is walking!!! I just don't know what to do! I am so proud and excited! She is doing so great! LOOK AT GOD! I will try and post a video soon!

No, no, no, no.....

So...that has been KJ's new thing. Everything is no no no no. *sigh* KJ has been doing great otherwise. She is just getting over a sinus infection and allergies are getting the best of her at times but she doesn't let it show her down too much. Keep praying! Thanks!

Picture Day

Today is picture day for KJ. I am so excited. She has a special shirt enhanced my Nana!

Kaidyn is doing so great. She is getting sillier by the day! She LOVES to make people laugh! She is starting to do several words in sign language. She knows please, more, eat, all done, and milk. Those are the ones she knows well. We are working on shoes and thank you. She is starting to walk while holding your hands and her therapist want us to work on her walking while we hold only one hand. Pretty soon she will be walking by herself.

PICS!

Apparently she wanted to see if astroturf tasted like real grass lol

Breathing Treatments are Back

Breathing treatments are back again. We have been doing the inhaler since her pulm. appointment on 4/1. She's had some ear drainage (yuck!), wet cough, nasty nasty nose, watery eyes, etc. It's like a mix between allergies and something respiratory. So we are back to it all. I really thought tubes would stop this. Wishful thinking! Now if only I could find a way to make her sit like a big girl during her ENTIRE breathing treatment. :/

Evaluations and such

This week Kaidyn finally had her Cerebral Palsy evaluations. She saw neurology, orthopedics and physical medicine and rehab and they all agree that Kaidyn does have a mild form of cerebral palsy, periventricular leukomalacia (PVL) to be exact. They are confident that she will walk and have very little difficulty with day to day activities. They noted her muscle tightening and said her hips are not normally placed. All this will be a constant battle and right now we are unsure how it will play out. They plan is to just watch and see how it affects her as she grows. Therapy will continue as is and we will explore other treatments and therapies as needed.

Kaidyn also had a pulmonology appointment and she is doing great. Her pulm. doctor does want her to use an inhaler twice a day to help with her lungs. They believe she has asthma but she is too young to officially diagnose. So with her inhaler with got a spacer and a new friend named Spinner (her duck mask). The inhaler and spacer are used together since of course she can't use an inhaler properly.

Please continue to pray for Kaidyn as she continues to overcome obstacles that come her way. I will continue to update on Kaidyn's progress so please continue to check the site. Love you all and thank you for praying and following Kaidyn's story.

A Quick Update

Just a quick update! Kaidyn is doing great! She is getting over pneumonia (prayerfully). She has been on antibiotics for soooo long so hopefully we are done! With antibiotics comes horrible diaper rash and loss of hair so pray for her please. She has been doing great with her leg braces and is starting to cruise, stand, and push/walk with her toys. I will see about trying to post a video of her so those not friends on facebook can see her live! Thank you all for following her story and praying daily.

Kaidyn has been doing overall good. She has been doing good with her ear surgery...tubes are bright blue and clear. She has been having a really bad cough for a while and it never tends to really go away. We are in the process of seeing what the cough is and why nothing is clearing it. Her pulmonary doctor is exploring the asthma route. So right now we do 2x daily breathing treatments. Yay! She has her first cerebral palsy evaluation scheduled for March 31 in Temple. So prayers needed for that. She also has a speech evaluation on Friday. Many evaluations still ahead so many prayers still needed!