Aliya is 3!!!

Happy birthday to our sweet Aliya! I can't believe she is 3! What a miracle she is and what a blessing she has been!
I have learned so much from you baby girl! You may have limitations here on earth, but that has not stopped you from beating all those illnesses and it has not stopped you from being happy! You are loved by so many! Your big sisters just can't get enough of you! You are such a fighter and I know Heavenly Father gave you to our family for a reason! I thank him everyday for it! No, it hasn't always been easy, but it's all been worth it! You have taught me so so much in the short 3 years you have been here! Life is so precious! You have taught me that we take just one day at a time! I know we need to cherish the moments we are having right now and we do!
All the 'little' milestones you have made have been so so BIG! You have found your voice and I LOVE hearing it! Those little smiles you have started giving! You wiggling all around! You reaching for me with those tiny feet of yours. You starting to grasp things even if it's for a few seconds, but you have found out that you only need seconds to pull out your hair :) You being off oxygen when you are healthy, even at night! All the doctor appointments that have been spread further apart because you are more stable! You love your baths! You love being held! You love your sisters talking to you, cuddling you and holding you! You love to be sung to! You love rubbing those tiny hands together!

WHAT A MIRACLE YOU ARE BABY GIRL!

You have shown us what you can do and I know there is so much more you will show us!
I am so blessed to be your mommy! I love you with ALL of my heart and always will!

(Pics to come)

Some more random pictures

Aliya's Birthday Party

 We are so lucky to have Aliya in our family!  In beginning I didn't know how long she would be with us...but she is 14 months old and we will take all the time we can have with her!  She has been such a blessing to our family and to everyone who knows her!  What a sweet sweet spirit she has and what a fighter she is!  She has had 4 major surgeries and has been to Primarys due to a few different infections and the Rhino Virus...but she has fought through all of it and is doing well.  She weighs 21 lbs and is still such a good baby! 

Aliya's One Year Pics

Come Celebrate Aliya's 1st Birthday

Can you believe it....Aliya is 1 on the 24th.  Wow what a year!  I am so so so grateful to have this little angel in our family!  It's amazing what she has been through and is still such a good good baby!  What a strong little girl we have!  Through this journey I have found the inner strength in myself!  It was so tough in the beginning...I definately shed many tears...but over the year I have become so strong.  Don't get me wrong I still have some days that are harder than others...but overall I have learned that we can all get through these challenges...and these challenges are what make us who we are and what we become!  I know Aliya was sent to us for a reason and a day doesn't go by that I am so grateful for her!!!!  I love being able to hold her and cuddle with her and watching her relax when I rub her head!  Oh the little things are what make everything worth all of these adventures we have had!  Words just don't explain how much love I have for her and my other girls!  L:ife is so precious!!!  Ok Ok onto the details of the party...
We are going to be at Pizza Pie Cafe on Saturday the 27th from 12-2.  The prices are as follows
Adults  $7.25     Adults drinks are $1.69  
Kids 9-11 $5.25 Kids drings are $0.99
        5-8  $4.25
        3-4   $2.25

Celebrating Aliyas 1st birthday with us is your gift to us!  We hope to see you there!

Here are some pictures...and another update well overdue!

 This is a picture of Aliyas neck...her c-spine isn't formed...so pretty much her neck isn't connected to her body.  So the result she will eventually have to have surgery 2 or 3 years down the road.  For now we are so so careful supporting her neck,.

                                                     Aliyas blessing day

 Here is the screws we had to adjust from her jaw surgery.  We had to adjust her jaw for 14 days instead of the 5 they told us. She ended up going through withdrawls from the narctics...which was so hard to watch!

Aliya now weighs 19 1/2 pounds.  Look at all those little rolls on her arms.

                                            Here is a little smile                                                               

                     First night in her crib...I think it was harder for me than for her!

 The first time we painted those dainty little toes....aren't they so cute!

 This is what they have to do for her sleep study...and we found out she still has central and obstructive apnea.  Which is unfortunate since that is what the jaw surgery was supposed to fix.

Aliya's new play chair

Well it has been a long road the last few months.  Aliya had her surgery in June and had the plates removed in August.  So it was supposed to be the easy part having them removed...but unfortunately she got an infection and ended up having the Rhino Virus which caused us to be hospitialized for 6 days.  So we went home and was on antibiotics for 2 weeks, we went back got blood work done and her numbers were good and that was a Tuesday and by Thursday night she had another fever of 102.9.  She ended up having a UTI and kept us in the hospital for another 4 days.  Wow...it was a rough few weeks.  But Im happy to say we have been home and stayed home for about a month now! 

An Update...well over due

June...Aliya had her jaw surgery.  Can I say that it was way more major than I had anticipated. She ended up staying intubated for 3 days in the PICU. When I walked in all I could do was cry. My poor little baby was hooked up to more machines than she even had in the NICU and her little fragile body was so swollen and got more swollen before it got less. They told us they would only adjust her jaw for 5 days it ended up being 14...and she ended up going through withdrawls from all the pain meds she was on. We were in the hosptial for 9 days...and that sure is a lont time to be away from your normal every day life and family!  We did make it through it and wow her jaw looks good and she has way more room in her mouth. She has learned how to swollow a lot of air....which in turns causes a lot of air bubbles in her belly. So usually when she cries we need to release the air through her g tube.

July...nothing too exciting happen.  Aliya had to have her plates in her jaw for 6 weeks so we were just letting her jaw heal and grow.

August...here we are. Well Aliya had her plates removed on the 16th and things were well until Sunday night. Her right side of her incision started bleeding a little bit and oozing. So we watched it and on Wednesday night I mentioned to Shane that I thought it was infected...sure enough 530 in the morning she had a temperature of 103.9...yep 103.9. I kinda freaked out and rushed her to the ER in Logan and they ended up transporting us down here by ambulance. On a side note she was going through withdrawls again from the pain meds. So here we are at Primarys going on 5 days tomorrow and they are leaning towards doing  a picc line so she can have IV antibiotics for 3 to 6 weeks. We also found out she has Rhino Virus which is another name for the common cold. Can I say our life is definately a challenge...but all the challenges make us that much stronger. She is one tough little girl and is my little hero!

Aliya's Blessing and upcoming jaw surgery

We were able to have Aliya's blessing yesterday. We decided to do it at our house and only had family come. What a special day it was! I am so grateful to have a husband who is able to give our baby girl a blessing. It was such a sweet moment to hear all the things he blessed her with! She is our little angel and words can't express how much love we have for her!
Well our next adventure soon awaits us...jaw surgery in a few weeks. When we had the ct scan done they noticed 2 vertibretes didn't form correctly so we had to meet with a neurosurgeon. The verdict is that she has no support in her neck and we have to be oh so careful with it. Luckily she has enough ligiments to support her spinal cord and if it does get pinched she won't be able to move her legs and arms. After talking to the neurosurgeon we will have to put her in a collar to protect her fragile neck....but not til after she heals from the jaw surgery. It was kinda a fluke we found out about her neck...but i am so so so grateful we did. I know everything happens for a reason. Eventually 2 or 3 years down the road she will have to have hardware placed in her neck to stabilize it...but right now she is too little and there is no bone to hook hardware to. One adventure after another...

Just some random pictures

Aliya is definitely growing.  She weighs 10 lbs 4 oz now!!!

Aliya at 6 months old.  

First time trying Cereal.  She didn't quite know what to think!

CT Scan

Well we were able to get Aliya's CT scan without having to put her under after 3 different tries.  We tried the first time while she was awake and she was too wiggly, then while we were waiting for the nurses to get sedation, she fell asleep so we tried again and we only needed another minute when she woke up and started moving again.  So we tried the sedation but unfortunately it did the opposite of relaxing her...it made her agitated and have a lot of secretions so we had to keep suctioning her.  So then we were in recovery having labs done for our Nephrology (kidney) appointment,  she cried the whole time...which was about 30 minutes straight which is a lot because she hardly cries!  As a result of all the crying she wore herself out and fell asleep so we were able to get the scan.  We only needed her to be still for about 3 minutes so I am so glad we didn't have to make another appointment with the outpatient clinic to put her under to get the scan.

THE RESULTS:  So the ENT wants to do the jaw surgery but on the CT scan it showed Aliya had anomalies of her Cervical Spine which is located in her neck.  To my understanding by what the Neurologist said it didn't form correctly...so now we have to go see a Neurosurgeon next week because the ENT wants to make sure it is stable enough to do the surgery.

Aliya is 6 months old

Well our sweet baby girl is 6 months old today. We are so blessed to have her in our lives! She has been such a blessing! Yes somedays are harder than others...but overall we are doing good and not to mention we have learned so much in these short 6 months. Life is so precious and we wouldn't change ours for anything!
We have had some hurdles we have had to cross. Last week Aliya had a grand mal seizure. She already has seizures but they are just a matter of seconds and she comes out of them. The one last week is like the kind of seizure you imagine what a seizure should be. Hers lasted about 3 minutes and she had never had one before. Her limbs were twitching, she was sweating, her chin was quivering, and she was crying...which she really doesn't do a lot of so we knew something was wrong. She has only had a few of her shorter ones so we are hoping and praying she doesn't have any more. She still has her reflux but even with all the spitting/throwing up she is still growing. As of Friday she is up to 9 pounds 12 ounces.  Also we have been hoping and praying my older girls don't get whooping cough. Before we came home from Primarys the doctors told me that all of Aliyas caregivers need to have the shot because if Aliya gets whooping cough it could be fatal. So hopefully we are careful and lucky enough to not get it! 

The Verdict is in...

Well it looks like Aliya does have sleep apnea. She stopped breathing 14 times an hour, which is on the low end of severe. To solve the problem she will be having jaw surgery. Her chin is pushed back, which makes her have a small airway and what happens is that her tongue falls back into that small airway the obstructs her breathing. The ENT will have to put metal plates into her mouth and then little screws behind her ears to we can slowly move her jaw forward. We will turn the screws for 10 days and new bone will grow in the space she then will have to have the plates in her mouth for 6 weeks. Its amazing the technology, and the findings we have now a days! Hopefully this helps with her breathing and helps with her eating by mouth. We are slowly trying to introduce things to her by mouth. From all the suctioning, she has a negative reaction to anything coming close to her mouth. Also her reflux is so bad that her poor little throat is swollen and so red. Yep, we are going to try another med...and hopefully it will help and get it under control. We are slowly trying to make it a positive experience for her so hopefully she will be able to have the satisfaction of eating by mouth!
We also found out that she is too little for allergies, so it may be the reflux getting into her nasal cavities causing the excess secretions. The things we have learned in these short months from having our sweet angel with us! She is truly amazing! She tolerates so many things, and still she hardly cries!

A week of Success!

Here is a list of all our successes we have recently had:

1. THE BRAVEHEART RACE: Thank you to all who put together and to everyone who participated in the Braveheart Race! We have such a great community and we are grateful for all your support!

2. ALIYA'S SURGERY: Aliya had her G-tube placed this last week and had her eye procedure done again. She did well and she woke up after really well. She has only been in a little pain, and as long as we keep up on Tylenol she does great.

3. SLEEP STUDY: While we were at Primary's Aliya was able to have a sleep study done to see if she has sleep apnea. Apparently if we would have waited and done it outpatient we would have had to wait 6 months and wouldn't get the results for a month. So we are so glad they were able to get us in! We are waiting to hear from our doctor for her results.

4. We were able to see our sweet friend named Earl. He was our nurse who took care of Aliya in the NICU. We love him because he just loves our little girl like she is his. He even carries a picture of her.

5. We were able to have the same nurse all three days while we were at Primary's. Her name is Gail, and we were so lucky to have her!

6. While we were at Primary's our other two girls were able to spend some time with their Nanny, Poppy, Aunt Bri, and Cooper on a little vacation in St George. It was nice to not worry about them because we knew they were in good hands!

7. We were able to spend Easter with our families!

AlIyA hAs HiT 8 PoUnDs!

Aliya has officially hit 8 pounds. As of yesterday she is up to 8lbs 9oz and doing well overall. She will be getting a g tube next month which I have heard will be so nice. To be honest I am scared to death! We have been so lucky not to have had any surgeries where she has had to be cut. Yes she has had the pressure in her eyes checked under anesthesia, but that hasn't required any cutting. She will have to stay at Primary Children's for a week, so we will be living the hospital life for a bit. Aliya still doesn't cry much, but every now and again we will hear her make a peep. She is just oh soo sweet. Its amazing the things she tolerates! All the poking and prodding, sometimes doesn't even phase her. We are so thankful for the warmer weather to be able to just get out of the house! We still have to be so careful so most of the time she is bundled like an eskimo in her car seat with her cover kept over her. I have been able to take the girls to the park a couple of times but Aliya and I are usually found in the corner as far away from people as possible.
Here are some of the sweet moments of our girls that my friend was able to capture! She did a great job and got such cute pictures! Our girls just love Aliya and are eternally bonded!

We Have Been Chosen!!!

This is what we have been chosen for:

Braveheart 5k/10k
March 31st, 2012 @ 9:00 A.M. Nelson Field House

Welcome to Utah State University’s Det. 860th Cadet Wing’s second annual Braveheart race! This year we have teamed up with Arnold Air Society and Army ROTC to help raise funds for Baby Aliya, the daughter of Shane and Tarasha Haslam. Aliya was born October 24, 2011, with Wolf Hirschhorn Syndrome, a condition caused from a missing part of the 4th chromosome. To learn more about Baby Aliya’s condition, please visit http://www.wolfhirschhorn.org.


To excite you all for this years’ cause, we just wanted to let you know what we as a community accomplished last year:
Over 500 runners showed up on race day!
Raised over $7,000 for the family of Baby Mason!
Over 20 local clubs and businesses enthusiastically donated, sponsored and volunteered in the race, starting a new community tradition!


The Braveheart Race has been established to raise funds and awareness for community members in need. Each year Utah State University’s Det. 860th Cadet Wing will recognize a need here in Cache Valley and will dedicate the race and ALL proceeds to that cause.


Registration Price is $15 with all proceeds going to help Baby Aliya, anything above that amount will be considered a donation. Pre-registration packet includes: Race Day shirt, bib number and a raffle ticket. Same-day registration packet includes a bib number and a raffle ticket.

Registration Packet Pick-up: Friday (March 30, 2012) from 6:00 P.M. to 9:00 P.M. at the Military Science Building (located to the East of the Nelson Field House (800 E. 700 N.)

Same-day registration will be on Saturday (March 31, 2012) at the Nelson Field House (800 E. 700 N.) on USU's campus from 7:00 A.M. to 8:45 A.M.

If you have any questions or would like to learn more about the cause, please contact Joann Wade at (435)797-8723 or atjoann.wade@usu.edu.

Here is the the link for the facebook page also: http://www.facebook.com/braveheartrace

We are so lucky to be a part of this and so lucky to be working with such great people putting this on! Thank you for all your support!

Happy Valentines Day!

Well it's been a long time so here is a little update...

First I wanted to thank my sister for starting this blog and for keeping up with it. I think things have settled down enough now that I will be taking over and I will do my best to keep it up to date.

Second I wanted to thank everyone for coming to Texas Roadhouse to support my family! What a great turnout we had. Also thank you Jen and Emily for putting it together and for everyone else that helped!

So Aliya is doing well. We had a rough time after her meds got changed and she had a hard time keeping what little she ate down...but we have it under control now and she is just doing the occasional spit up/throw up that a baby usually does. She is definately getting bigger. She has reached 7 lbs 2 oz and is now big enough for a g-tube which is a button put into her stomach and that will be how she eats. I'm a little nervous for the procedure because it is major surgery she will be having...but we have heard only good things about it.
She has had another hearing test since coming home from Primarys and her hearing isn't as severe as they told us it was. She will still need her hearing aids which we are so grateful for because we don't know if and how well she will be able to see. We live in a great place for resources. We have her enrolled in Early Intervention and we have great people come to our house to help us work on different things with her. We are going to do all that we can to make her the best she can be!!

From Aliya

I'm almost 6 pounds! I'm weighing in at 5 lbs. 15 1/2 ounces and doing well! I have found my voice and like to cry on my mommy's shift at 3 am...but I don't cry on daddy's shift :-) I am becoming more alert and I love to wiggle around. I just got fitted for my hearing aids. The picture is below of the mold. Overall things are good and I'm loving being home!!!

No eye surgery for Aliya

Aliya was supposed to have eye surgery Thursday night but the pressure stayed the same so no eye surgery at this time. Her oxygen levls kept dropping so she had to stay at Primarys for two nights to make sure she is stable enough to go home. Taya made Tarasha promise that she would bring Aliya home with her. So thankfully she had a good night and she will be coming home today!

I also wanted to let you know about a benefit lunch at Texas Roadhouse in North Logan. It's January 18th from 12-1 p.m. Tickets for meals can be purchased for $10 a plate for Adults, and $2 a plate for kids. For more information about purchasing tickets you can contact Jenn Jackman at 801-703-1956 and jackman jenn@msn.com or Emily Bezzant 435-890-5473.

It was definately a Merry Christmas!

Aliya is doing well, as of last Wednesday she was 5 lbs. 2 oz.. Tarasha and the family are all loving having her home and her sisters can't get enough of her. They were so grateful to all be under one roof. Aliya will see her pediatrician on Wednesday and is scheduled to get her eyes checked January 5. She will have to be sedated because she is too wiggly now. There will be lots of follow up appointments soon to check up on the various medical conditions she has.


Dean and Betty, Shane's parents
Christmas Eve

Update

Aliya was able to come home on December 21st. What a great Christmas present that was! We all just can't get enough of her. We just love holding and kissing her! Since we have been home we have been able to meet with our Pediatrician here in Logan who is following Aliya very closely and has fallen in love with her just as we and many people have! She is still on oxygen and who knows how long she will have to stay on it. She has hearing aids but is still a newborn who sleeps all the time so we really haven't seen the benefits yet, but we know they are there. Who knew Shane and I would become nurses without going to school for nursing? We have learned a lot and I'm sure we have much more to learn! Aliya is the light of our lives and she has definately blessed us in oh so many ways! Don't get me wrong some days I say to myself...can I do this? I know with all my heart Heavenly Father chose us and trusted us with this sweet spirit. Who knows what the future holds, but we are ready. We are so lucky to have all the support we have had, and we can't thank all our family, friends and our community enough!