The Tortoise and the Hare

It’s hard to be a parent. It’s challenging to make hard decision when it comes to your children. With that said, Jerad and I decided not to get the Botox shot for Vaughn’s torticollis. After a couple discussions and a little bit more research we felt like we wanted a little more time to try to stretch and strengthen his neck. Vaughn has finally turned the corner and is eating 100% table food and we are just so proud of him and grateful that we just needed some more time before taking the extreme measure. We won’t be going to the swallow study after all and that is a huge blessing! We did take Vaughn to the Botox appointment though so we could talk to the Rehab doctor about our concerns and wanting a little more time and she actually agreed with us. We had taken Vaughn to get another x-ray of his neck and spine and she was pleased to see that his neck wasn’t as severe as she had originally thought. We will go back in 2 months to see if we made any progress with more aggressive stretching and re-evaluate at that time if we should schedule the Botox shot. We did learn that there is the start of some mild scoliosis. There isn’t anything we can do for that right now so we will just continue to pray him out of it.

We also had another helmet scan on Vaughn and he grew another millimeter. We didn’t get a print out this time as the moves continue to be small. At first I was discouraged by such a small move, yet again, but have been reminded that we are still moving and that is progress. Since Vaughn is older and most kids are out of their helmet by this age, we are up against time. Time though isn’t an obstacle for God. As I was praying this morning over the torticollis and the helmet, I was thinking of this new toy that the twins received from some dear friends of ours. Michele, Hannah, and Logan had come over to play on Saturday evening and they brought this animal toy that sings and one of the songs is about the slow turtle… And Vaughn loves this song, he plays it over and over and it is driving us crazy (Thanks Michele!) And from this toy, God literally placed the story of the tortoise and the hare into my head. I of course started to cry as He gently reminded me that thought the tortoise is slow, he finishes the race. His strength and diligence teaches us that the journey is the destination. So I will continue to embrace Vaughn’s helmet, his helmet of salvation and trust God that His timing is perfect.

With all that said about Vaughn, I must tell you that Asher is starting to sign! Sign language is important to us and I can’t begin to say enough wonderful things about our team of therapist who are involved in our family’s life on a weekly basis. Ms. Susie who is our PT has such a gentle heart and I believe truly loves our boys, had her son go to the library for us and rent us “Baby Signing Time” DVD. She dropped the video off on Thursday and on Sunday evening, Asher signed for milk! We were overjoyed and couldn’t wait to tell the team. We have been signing a couple signs with the boys for many months now but Ms. Susie knew their love for Baby Einstein and found a video that worked. Last Thursday as Vaughn was having PT and Asher and I were reading a book (this kid LOVES books), we came to the page with a dog on it and I said “dog” and was about to turn the page when Asher said “dog” and did the sign at the same time. Susie and I looked and each other and started clapping and laughing with joy as dog is one of the signs from the video.

I am so proud of my sons. We are on our own timetable and though it can be hard on us, each milestone is a reminder that a timetable is the average and Vaughn and Asher are anything but ordinary. To the Tortoise and the “Dog”, well done!

One Down and One to Go!

Asher has graduated out of his helmet! His last day wearing it was February 25 and his final scan showed that his head circumference was measuring at a 5 which is the goal when we started this journey 4 months ago. His head isn’t perfect but it is so much better and the Doctor thinks that in time, as he continues to grow it will get even better. We are so blessed that insurance approved a helmet for him and that we went ahead and did it as he shouldn’t have any issues in the future. It was worth the time and energy!

Before helmet                                                                 After helmet

Vaughn’s third scan showed some growth but is still at a slow pace (1 mm of growth). We knew he would wear his helmet longer as we have more shaping to do. I am just praying we are out of helmets by the summer when it gets hot. Vaughn has been eating so much better lately and that is a huge answer to our prayers. He eats about 95% table food and this progress has simplified my life and given me the opportunity to start feeding them at the same time! We just might not have to do the swallow study after all. Asher is using a sippy cup now too and so he has become totally independent and really loves to feed himself. Vaughn is holding his cup and understands the concept but still thinks it is a teething item but we are close! Now that Vaughn is eating better, we are hoping that we will see bigger changes in his helmet scans.

Jerad and I took Vaughn for his final blood draw and he gave a urine sample so they can test every possible outcome to try to determine the reason for the delay in the boys. We won’t know much for at least 6 weeks as this testing is expensive and time consuming. Our appointment with the Rehab Doctor went really well, I think it went so well because Jerad and I really like her. She goes above and beyond to make sure Vaughn and Asher have the best care. She is going to continue to follow Asher’s progress but since the helmet worked so nicely and he is starting to bear weight on his arms and legs there isn’t much more she can recommend. She did order another x-ray for Vaughn as I am still concerned about him having scoliosis and while we were there, we also took an x-ray of his neck to see if the torticollis is getting worse as it sure looks that way to us.

The torticollis…. Probably one of the main reasons why Vaughn has such a hard time eating. After much discussion, talks with our therapists and chiropractor (though he wasn’t as thrilled about this as PT and OT) Jerad and I have decided to take the next step in trying to leave the torticollis diagnosis in our past.

 Botox. Yup, Botox for babies.

 I know what you are thinking, we had those same thoughts but hear me out. Botox has been used in the medical industry for many years before Botox was commonly known for its cosmetic effect. The medicine is used to treat spastic or tight muscles and Vaughn’s neck muscles are really tight. Our rehab Doctor will inject the medicine into the muscle to help relax and stretch the muscle. This procedure is commonly used in children with cerebral palsy also. Once the medicine is injected into the muscle the medicine blocks the signals from the nerves to the muscles and weakens the muscle contraction and this causes the muscle to relax. The Botox isn’t permanent and lasts on average of 3 months and the effects will wear off gradually. The side effects and risks are very low and Vaughn will have a follow up appointment 2 months after the shot to determine if the Botox is working and just so he can be monitored closely. Vaughn is getting the Botox tomorrow, so if you could be praying for us as we begin yet another chapter to our already incredible story, we would be grateful. I am standing firm on the hope that Jesus gives and placing that hope in Him and not a medicine. I am confident in my expectation that He does all things for His glory and healing Vaughn of his torticollis, through Botox would be another miracle that would not go unnoticed or unshared!

Their Heads and My Heart

More updates on the helmets! Asher’s last day in his helmet should be February 25^th! There is one more spot that needs to grow and they have shaved out all they can from his helmet so whatever progress is made by then is it. His head is looking great and I am so thankful we were approved by insurance to get him one. As for our little Vaughn, he had his second scan and there wasn’t any real growth. For the helmets to work he has to grow and we have had some struggles in the eating department with our little man. We are praying for a growth spurt for Vaughn so we can see some more big changes in his head. We are anticipating about 3 maybe 4 more months of wearing his helmet. I am currently working to get a swallow study ordered for Vaughn so we can rule out any medical/mechanical reason for the delay in eating table foods. Jerad and I also took Vaughn to have the first round of blood drawn for his genetic testing. Because he is so small and they needed such a large amount of blood, we have to go back later this month to finish the rest of the tests. We see the Rehab Doctor next week to find out what the next steps are regarding the torticollis in Vaughn’s neck. Unfortunately the torticollis isn’t getting better since he has been wearing the helmet. Some good news for Vaughn is after seeing the Eye Doctor yesterday she said, from what she can see, he is using his left eye and it is the same vision as the right eye! That is a relief as back in August he didn’t appear to be using his left eye as much as the right and the vision wasn’t as good. The Eye Doctor did say though that this most likely will change again and if Vaughn is still in his helmet and not keeping his glasses on, we will have to patch his good eye (the right eye) for a couple of hours a day to get his brain to keep using his left eye. Won’t that be a sight! Vaughn will be our little football pirate dude!

This blog is all about my boys…my heart behind it is so we can not only have something to look back on many years down the road but so our family and friends can know what is going on with Asher and Vaughn. That each of you can pray alongside us in this journey and that maybe someday another Mom or family will be in our shoes and be able to read this blog and know that the helmets aren’t too bad and all the therapies’ do pay off. Speaking of therapy our PT tells the boys “WOW” when they do a good job and Asher started to say WOW and it is just the cutest thing!

My heart though wants to share a little bit about how it feels today! I was driving to Brighton the other morning to pick up the twins from an overnight with my parents and the song “Wanted” came on by Hunter Hayes. I am not sure if you know this song but it is literally the words right out of my mouth to my Husband. I hear this song and it just brings the best memories of Jerad to my mind and it is my heart’s desire to make him feel wanted daily. I am proud to be his wife and humbled at how hard he works for this family. As I was singing my heart out, alone in the car a wave of emotion came over me. I thought…. This is also my love song to Jesus! I want to make Him feel wanted too! When you are in an intimate relationship with your Savior and King, you just want to wrap your arms around Him and tell Him that I would fall apart without Him. In a country where “In God We Trust” doesn’t really mean anything anymore, all I want to do is show how trust worthy He is and tell Him, He is WANTED. I just wanted to share this song today and leave you thinking about the words…..

http://www.youtube.com/watch?v=ruyaKdPfTN4

PS. Izzy- if you are reading this, you are missed and wanted.

Whole Milk and Haircuts

Two new first for the Allbritten twins! We started to very slowly add whole milk to the boys’ bottles as the Pediatrician said it is time. I just love new milestones! And Vaughn and Asher had their first haircuts! I have to be honest and say that it did not go well……Vaughn didn’t mind it but he started out crying and then pulled it together towards the end but poor Asher, he is so sensitive….. he was a wreck. He did not enjoy himself! L I have some pictures and just want to say THANK YOU to Jen my friend for working through the tears and giving the boys such adorable first cuts!

We are growing up....

Good news! Vaughn has graduated to see our Chiropractor, Dr. Ryan to 2 days a week. Asher should only be in his helmet another 4 weeks! Some big milestones are taking place this month and we are grateful. Vaughn still has another 3-4 months in his helmet but we got his first scan and there was progress. Which means our little man is growing. We had our 1 year check up with the Pediatrician and Asher is weighing 19lbs 2 ozs and Vaughn is 16lbs 5ozs. The boys continue to stay about 3 lbs apart.

                                          Vaughn’s first scan (wearing his helmet for 4 weeks): The inside circle is his first scan before wearing the helmet and the outside circle is the progress he has made!

                                        

                                                                     

                                           Asher’s second scan (wearing his helmet for 8 weeks):

Asher wanting to help take pictures!

                                                                         

As we let go of one weekly appointment we are blessed to say we are picking up a new one…. This one though is very unique in character because of the therapist. Vaughn and Asher are starting speech therapy this week and I am humbled and excited to say that it is their Auntie Michelle that will be teaching and training them! Michelle and I have talked and prayed about this move and for now we fill like it is the right decision, though I have given her full permission to fire me (recommend a new speech therapist) at any time if mixing friendship with business gets tricky. I feel at peace knowing Michelle, on a professional level will help me raise my voice, and shout loud if needed to advocate for my sons. I know her insight and wisdom into the boys care will give Jerad and I a strong approach to what avenues should be taken (or not taken) to strengthen their abilities. After a hard conversation with Michelle, and many prayers, Jerad and I are going to move forward with the genetic testing on Vaughn. We are going to have the next round of blood drawn on him but we are going to wait for the results of that test before we have the MRI done. Thank you Michelle for loving Vaughn and Asher so much and being willing to walk this journey with us.

The Genetics of our Gentlemen

Happy New Year! Jerad and I are pleased to be putting 2012 behind us (not to discredit the joys of the past year) and start a new year with many new firsts for our family.

After meeting with the genetic counselor, we don’t know much more but I am confident that we are in the right department. After the doctor spent some time talking to us and studying the boys, his educated guess is, for a lack of a professional term….”twining”. Technically the egg and sperm are not suppose to split in half and so on very rare occasions, they don’t split evenly. He thinks the egg just didn’t split evenly and then with the complications with the placenta, Vaughn’s fight onto earth was even harder than we originally imagined. Even more reason to give all of our gratitude to God for bringing us Vaughn! I have to say that this has been a really hard reality for us to face, as parents you just want the best for your kids….. And yet God’s timing always amazes me as the same day we had this appointment, that evening I met up with some friends who have known and loved me since our days of high school and had great wisdom to share with me. They reminded me that twins or not, it is hard not to compare siblings and blessed me with words of encouragement as I stared into each of their comforting eyes. I left that evening feeling confident again in God’s perfect plan for our twins.

The genetic counselor and doctor left us with a couple of decisions. They would like to draw more blood from Vaughn and do some more testing, less generic and more specific to a couple of syndrome’s that could possibly apply. They would also like to do an MRI to take a look at Vaughn’s brain. We had brain ultra sounds done on both Vaughn and Asher in the NICU when they were first born and they didn’t see any brain bleeds at that time but would like to look again now that he is a year old. The reasoning behind wanting to do the MRI is that the counselor and doctor are concerned with how delayed the boys are in their motor development. Would you pray along side us if we should do one or both of these tests? We would have to put Vaughn back under anesthesia to have the MRI done and we DO NOT want to do that again…..and the chance that we would find something out that would change how we care for the boys is slim. Even if we find out he has an extra chromosome or is missing one, we still might not be able to do anything about it. But on the other side, we might find out some information that would help us understand and know more about Vaughn. There is a possibility that some of the tests would also give us an outlook into the future as there is a chance that Jerad and I could be carriers of a genetic code that we could possibly pass on to another baby. At this point in time we feel our family is complete but from past experience we know that God’s desires for us are abundant, so we will discuss this again with the Lord once the boys are much older. J This appointment was for Vaughn but they did ask that we bring Asher with us, as even though Asher isn’t quite as far behind in his motor skills as Vaughn and his eye and ear don’t seem to be effected the same way, the fact remains that they share the exact same DNA…. So whatever Vaughn has, Asher does too. So we don’t need to draw blood or have Asher do the MRI too as the results would be the same. The doctor measured Asher’s left eye and ear and they are a little smaller than the right, it just isn’t as noticeable when looking at him. We have plenty of time to make these decisions as his/their genes don’t change and are not going anywhere so that is a relief! I am thinking we will wait until we are out of helmets to move forward as we feel like we live at Children’s.

 We have a weight check next week and a helmet appointment so I will be able to let you know how the boys are growing and hopefully share good news with Vaughn’s first scan. Vaughn’s torticollis isn’t getting better as we were hoping to see some improvement from his helmet so we do have a follow up appointment with our rehab doctor next month.

This is the year of Jubilee for our family and we are going to embrace it! As Jerad and I go into our 7^th year of marriage we are going to learn how to rest, take a Sabbath and enjoy Vaughn and Asher. We spent our New Year’s weekend up in Estes Park with some extended family and asked God some questions….What are you going to believe in faith for this year? What does God want to accomplish in our life this year? What is HE saying this year? 2013 is here and we challenge you to ask God those questions and then wait and listen for His voice!

These last 4 weeks have been busy for us! Vaughn is just about a month from his surgery and healing nicely. We have his new helmet that fits so much better and he has been wearing it full time for the past 2 weeks. His glasses have been a challenge as now that we don’t use the strap to keep them on but fit them into his helmet and he can now pull them off and use them as a teething device.

He looks pretty sophisticated with both his helmet and glasses on though! He only wears them once or twice a day when he is watching a little baby Einstein.

Asher had his first scan since wearing his helmet for 4 weeks and we have progress! I am so thankful that the helmet is working because that also means Asher is growing. The red outline (the inside circle) indicates his original scan and the blue line (the outside circle) is showing his progress. The top of the diagram below is the top of Asher's head and if you look at the picture of Asher, you can see the bottom portion of his head is becoming more round. Vaughn should have his first progress scan the beginning of January.

Asher has also graduated out of the eye care clinic! His eyes are looking healthy and he can now begin to get his eyes checked as he goes to school with the rest of the kids. He does have a slight astigmatism but the good news is the astigmatism is even in both eyes so there is no need for glasses at this time. Glasses are in his future but as for now, that is one less appointment for us.

I received a call earlier this week from our pediatrician’s nurse saying that there are no abnormalities in the genetic testing that was done when we drew Vaughn’s blood. What a relief as we do have an appointment with a genetic counselor next week. We are still going to meet with the counselor and the genetic doctor that specializes in the eyes to see if we can put a name to and or find any course of treatment for Vaughn’s eye.

So much has changed in a year….. Asher came home from the NICU on December 9^th and this will be our first Christmas as a family at home. Vaughn later followed on December 30^th and though this was the hardest and most challenging year for Jerad and I, I know we wouldn’t have changed it. It is our journey and Vaughn and Asher’s story.