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!

Ears Are Clear

Well, KJ's ear procedure went well and post op was great! Tubes still in place. I think she is still having some upper respirtory issues. I was hoping they were related to the excess fluid in her ears but it appears its not. So, we will find out more next week when we follow up with pulmonary in Temple. Keep ya posted!

I haven't forgotten about pictures!

Surgery-Tubes

This Friday, Feb. 4th Kaidyn will be having tubes put in her ears. Please pray for her, the doctors and the nurses. Her pedi says that he thinks her speech will increase extremely once these tubes are in because she has had some much fluid in them for so long.

Keep in mind that in the coming months she will be having her CP evaluations. I'll keep you all updated as those are scheduled and results are in.


P.S. I realize I haven't put pictures on the blog in a while. Stay tuned.....

Our Week of Doctors

So this has been a busy/tiring week for us. As stated in the previous blog KJ had to go to the ER Monday night. After doing the follow-up with her doctor we determine that more than likely she didn't have a febrile seizure. Thank Goodness! So she still just has the double ear infection. She will need to have tubes placed in her ears so we have scheduled that for the beginning of Feb. Thursday we then had to go to Temple for our quarterly NICU follow-up visit. The OTs said she is doing great! She right on target with everything developmentally. The NNP said that she is doing good as well but would like for her to have an evaluation with the Cerebral Palsy Clinic and get a CP evaluation. Mostly due to her high muscle tone. She also had an appointment with Pulmonalogy who wants to try a few things to see if we can get her to start breathing better especially at night. She was also ordered to have an EKG done. So we go back to Pulmonalogy in Feb. to check her progress.

Please pray for all of her upcoming test. We all know her journey and knew it would end at the NICU doors. So continued prayers are needed.

First Trip to ER

Kaidyn had her first trip to the ER last night. She has, yet again, another ear infection. After taking her to her pedi doctor and ENT yesterday it was determined she is going to need tubes put in both ears. By mid day she had a fever again but it was decreasing. Later that night she started having a hard time breathing and her lips started to turn blue. We took her to the ER and they believe she had a mild febrile seizure. It happens when the fever gets to high and the brain spasms a little. She's doing ok now and has no fever. Please pray for her and her health right now. I knew this winter season was going to be hard but I no idea it was going to be this hard.