Getting into trouble.

The last several weeks have been wonderful.
Mid-August we went to my cousins Quincenera.
Sadly we had to leave early because it was over stimulating for both Liam and Adam.
The next morning we woke up to happy boy who was all over his crib.
We were surprised that out of no where Liam was rolling and exploring in his bed.
This, of course, was a milestone that we were anxious to see.
Our guess was that watching all the kids running around at the Quincenera pushed him to moving some.

First time on a swing by himself... sort of... with his sister. Loved it until Eliana said "Help, I am being squished!"

 Waking up to this is priceless. It's taken far too long but it only made it much more special.

 That smile. He knows he is going to be trouble now. Look out mom and dad.

 Below, reaching for the water bottle he spotted.

 

Sitting for a picture. You can't see but dad was there to support him.

 

Set the bucket of toys next to him and he dumped it down. Sister joined.

 

Who knew nearly 3 years ago, when we bought it, this piano would be his favorite. We've had to change the batteries a few times.

He has been none stop ever since then.
He will roll to get to toys and other things like diaper bags and messing with them.

He sits for longer periods of time and enjoys it.
He is one satisfied boy. Satisfied with himself.

His therapists have are surprised and happy with his progress, I am sure not as much as we are though.
It's quite funny. For so long we have been waiting for something like this to happen and now we don't know if to be happy that he is getting into trouble or getting onto him for it. It definitely puts a smile on our face though.

About two months ago his Speech Therapist brought a box of dry beans. He could not be near it or else he would scream off the top of his lungs but now he digs into the box and makes a huge mess.

He also finally got his bath chair. Something that we desperately needed and we love it. He, not so much. We think it's the mesh. Now we wait for the standing frame and wheelchair.

Monday he had an appointment with Neurology. Just a "How is he doing? Here's a prescription refill." kind of appointment. He will see Ophthalmology in October and we will then determine when his eye surgery will take place.

Thank you for taking an interest in Liam's progression and hoping the best for him!

Fun weekend!

We had a pretty busy weekend.
Liams MRI results were in.
Oncology said they looked great!
No sign of the tumor trying to make its way back.
The Oncology Doctor decided that we would see him in 6 months, which gives us a nice break, but if we saw any warning signs to bring him in as soon as possible.

Saturday we were invited to a couple of birthday parties.
We usually don't go to parties often because of Liams sensory sensitivity, but we thought it would be fun.
The first party was Frozen themed and Liam enjoyed the music. There was also balloons and if you know him you know that as long as there are balloons for him its a party he can't miss.

The second party we worried because of the heat. It was going to be outdoors but it was fun for him. He enjoyed swinging and even rode a horse.

He was ready to be home at the end of it all but it was so nice to see him smile so much.

Update!

I can't exactly remember the last time I updated ya'll but it was for sure before the new member arrived.
The last month of my pregnancy we noticed a difference in Liam. He became very fussy. Middle of the night wakings and he would wake up screaming. Inconsolable crying. Feedings were hard. We thought that it was possible that it was my pregnancy but a part of me thought maybe he was having some seizure activity that we weren't seeing. He had some teeth coming in so it was another possibility. Then one night in June he was running a fever. He began vomiting. It was happening again. Then we saw seizures. At least what we thought were seizures. We ended up taking to Children's Hospital ER. The other two kids as well as the grandmas joined in on the fun. He had a CT Scan done. Not gonna lie, I was getting worried. Everything looked normal though. There was no sign of any sort of infection so he was just given some Tylenol and were told to up his medication and call the Neurologist. Besides being lethargic he seemed better after that. The next day we called Neurologist who said to go back to his normal dosage. Once we did they started up again. Once again we called Neurology and they uped his medication and has done great since then. Since then he has been a different baby. He is much happier too. Since he wasn't feeling to well he regressed. He was doing better with solids and now he is back to stage 2 gerber foods. During that week he wouldn't eat though we had to feed him Pedialyte to keep him hydrated. Though he regressed in eating, he is progressing physically. He has come such a long way.

He has since started Visual Therapy and he loves them. They are two older ladies and they are great with him. They are impressed with how much he has progressed even from the time they started in May to what he does today.

He had an appointment with Ophthalmology in June. Everything looks the same so they have decided that Liam is in need of eye surgery. They will be operating on the eye muscle so that he can use them together. There is a percentage of children that require a second surgery or more. It is an outpatient surgery so he will come home the same day. We haven't talked about what day just yet until we talk to Oncology and Neurosurgery so that we can get an OK from them.

He was also referred to an Orthopedic to get his back checked. His Dr was worried that he may have the beginnings of sclerosis. He had an x-ray done but she said his back was straight. She just wants to see him in a year to make sure it is still straight because it could develop into sclerosis especially with the size of his head and the weight. She also mentioned he would most likely need leg braces in the future and she referred him to Physical Therapy. So we should be hearing from them soon.

His pediatrician also referred him to Gastrointestinal. He and Eliana have some really bad re-flux. They ordered form a swallow test. So we should also be hearing from them soon.

He recently had an MRI done. We get results this coming Thursday but since we haven't received a phone call it should be normal. During this MRI he also had a hearing test done that needed to be done while he was asleep. At first I was scared because it took about 3 hours and someone came out to talk to us. It was about the hearing test. She told us his hearing seemed normal.

Liam is growing. He is getting heavier and the stroller is no longer all that great for him. I did not think of it before but his Occupational Therapist has helped us getting him some equipment ordered. We are in the waiting process of getting approved by his insurance. So we are waiting for a bath chair, a wheel chair, and standing frame. We had to pick everything to the color. Who knew color picking was harder than thinking about your child using a wheelchair. Anyways I didn't think I would ever say it but it's true, we are excited to be getting this equipment. Not only will it make it easier for us in a way but he will be more comfortable in these than going about the day the best way we can for now. If that made sense.

Liam has been trying to be more verbal. He still uses his sign language skills but is far more verbal. He even fights his sister for toys. He says "I wawa" when he wants something. He says "Ah" with mouth wide open during feedings for more. Or he will try and say "Mo" for more. Pretty sure we have heard him say "Ada" for Adam. He says "no" and says "dadadadada"
He is beginning to pick up anything that is near him even if he drops it because he didn't like the texture.
He is starting to take just about everything to his mouth. Usually you tell kids not to do that but in this case it is something we cheer for.
He still doesn't sit on his own but he can sit for longer periods of time and with less support.
He loves the color red. During feedings we are not allowed to use a red spoon. He will fight you until it is in his hand. Can't even use an orange spoon. Blue is best. He even tries to make the motion of feeding himself. He has actually taken the spoon to his mouth.
He still doesn't enjoy tummy time but he can lift his head while on his stomach and wont fight it as much.
Rolling over isn't 100% done but he is getting there. When he wants to, that is.
He enjoys time on the bumbo a large part of the day.
His new favorite toy is a phone he got for Christmas last year. It plays several songs including the alphabet. Sometimes he will put it to his ear and at times he falls asleep with it on his chest.
And he loves his Abuelitos, as well as his uncles and tios.

Seems like he is progressing now that he knows he has someone that will be looking up to him. Even if hasn't quite warmed up all the way. We know he loves his little brother.

Busy Busy

For the last 4 months we have been super busy with Mr. Liam.
Hopefully all of that is coming to a stop or at least slowing down.
When we first moved to Texas, ECI ( Early Childhood Intervention) was fast on it and got Liam set up for therapies quick.
Usually they come to our house but there is nowhere we can do his therapies since all our things are still taking over the living room. 
Hopefully when we are settled in better (before the new baby) they will be able to see him in our home.
Loading two babies in the car, driving 15 minutes, unloading and after about an hour do it again, take advantage and run errands while out and about which means more loading and unloading for 4 days a week every week just isn't an idea of fun.
I had to slow things down and have a couple of therapies on the same day and have it every other week instead. 
That has slowed down but we still had plenty of other appointments.

Last month Liam had his 15th month appointment.
A little late but had it.
The Doctor was awesome and was quick on getting Liam referrals for all the Doctors he needed.
She was very attentive and wanted to know every single detail of everything that we have gone through with Liam. She also scheduled a hearing test because it worried her. This was the second person to say something since ECI had also brought it up.
He got his shots and he was not happy. Poor guy I would not be either. Before Liam had his shots Eliana kept saying "It's Elianas turn. My turn mommy." When she saw the shots and Liam crying she began to cry with him and hugging him and when she was finally calm she said "It's not my turn."

The calls came soon after to schedule Liam with specialists.
Liam was finally seen by Oncology.
They were quick and scheduled him for an MRI that Friday after the appointment.
Jeez waking up a bit before 5:00 to make it to the MRI in Dallas was hard.

Liam was wide awake and didn't mind. It was almost as if he felt home.

 He was chatting away with the nurses.
Here they do things a little different. In Salt Lake I watched my little guy suffer as they pricked every part of his body and he bled every time because they had problems finding a good spot.
This time he was given sleeping gas before they pricked him.
After almost 2 hours it was time to wake him up and just like I would have acted he did not want to be awaken. Eventually he woke up, ate, and we left.

By the end of the month we had seen Oncology, Neurology, and Neurosurgery.
They said the MRI showed no sign of any tumor returning, which was something we were glad to hear.
Neurosurgery seemed to be a little quick into thinking Liam was not progressing but we assured him that he has been doing a great job and progressing. Slowly but surely. He said he would just keep an eye on him and as long as we say he is progressing then he will not be in need of the shunt. Scares me every time.
Neurology was great. She was very attentive and specific. For the third time Neurologist asked if he had a hearing test recently. Since the answer is no she referred him. She saw things that worried her a little.
This was beginning to worry me.
Before the month ended he was seen by Audiologist. They tested him and believed one ear was better than the other but were not sure how much he could hear from each. They weren't sure he was receiving some waves with one ear and other waves with the other. So they wanted to schedule him for an anesthetized test. Most likely happening in three months when his next MRI will be done. I have come to love the Children's Hospital here. The Doctors are awesome and they try to make everything easy for you. For example Oncology has days when Neurology comes in and sees you during your appointment with Oncology and other days when Neurosurgery comes in. This is how we were able to find a Neurosurgeon.


Ophthalmology set up an appointment even though he had just had one before moving. They wanted to see him. Pretty much the same thing. He has vision loss that glasses won't help because it comes from the brain. They can't exactly tell how much he says but they know he at least sees silhouettes. His eye nerves are pale and they don't know if it's from birth or from the surgery. So just follow up in a few months and just keep watching his nerves to see what they do. They also pointed out the deviated eye and that they could perform surgery but I don't find that to be a problem.

The one experience that I am almost embarrassed to talk about is a trip to the ER that we had with Liam. He fell from a massage table onto tile. According to his Pediatrician he had a concussion. I think I felt worse than ever when it happened. We were lucky that  
Casey was home early. He was seizing and vomiting. They gave him a CT Scan and everything seemed fine. So he was sent home. We were to just watch him. He had a bruised eye, which I was glad it wasn't his head. Still can't understand how he fell and landed face down. None of us can. He is doing great now but for the rest of that day and that night he would throw up every time he ate. Glad we are past that.

This month Liam had a EEG test scheduled. Which after the accident I was hoping we would catch any activity whether due to the accident or just the return of them. But the test was fine. No seizure activity. Just one side is slower than the other which we knew would be normal after surgery. So again just watch him. His last Neurologist wanted to wean him off the Keppra this spring but here they leave the child medicated for two years which I am ok with. Better to be safe. So possibly next Spring he will be medicated free.

Liams Progression:
In November my family came to visit. At the time Liam was still not doing much of anything. So my dear mother gave him therapy. She massaged him as well as work the energy. Thanks to that in that week he was able to begin gerber foods. And could manage his head a little better. This was the main reason we decided to move. We saw more progress with what my mom did in a week than all those months of therapies. Now that we have moved Liam has come such a long way.

He plays with his feet and even brings them to his mouth when he has socks.

He can sit for longer periods of time. He is closer to sitting independently.

He says "No tickle tickle" even though we know he loves it.

He enjoys rough play with daddy and sister.

He enjoys slides and swings.


He babbles a lot. He even squeals really loud. He even likes to sing "El COCO No". Watch the video and see for yourself.

His favorite toys are a fabric spider-man and iron man, sensory balls especially the light up ones, anything with music and lights, and whines to get the ipad or phones from our hands. There is also a drum stick that he will lick like it's nobody's business. He loves balloons. We know this because he has also been reaching for things. He will use his right hand more but it's something.

He is obsessed with paper and will try to get things into his hands by using his feet.

He also has learned some sign language but will mainly use the sign for "more" and has a couple that he has come up with. He recently learned to sign "daddy". His therapists are just so impressed with him and brag to each other about how smart he is. He has his own sign for "music" whether he wants you to play some or sing to him. And is in love with the Frozen sound track and Taylor Swift. His favorite Pandora station is the workout station. He will cry to Christina Perri "A Thousand Years" and Elton Johns "Can you feel the Love Tonight." He is very sensitive to music so there is A LOT more that makes him cry. He falls asleep to rap. It is something that soothes him and rocks him to sleep so if we take him to my brother's room he will pass out on the floor. They are perfect babysitters. 

The best thing is he will smile for pictures when he realizes what I am doing.

January 2014

January was a very busy month for us.
We moved mid January and we were full of appointments for Liam.
He was due for a MRI but we moved before we could get one.
So here is a small January review.

The first couple of weeks Liam had a couple of appointments at the Pediatrics Rehab with Physical Therapy and Occupational Therapy.
I was only able to make it to one because I wasn't feeling to well.
Liam has done a better job with supported sitting.
He doesn't to be in as much pain as before.
They were surprised every time with his progression.
Slow but it is definitely progress.

 They strapped Liam to a chair. This was the first time he ever did anything like this.
It didn't last very long but it was longer than I thought he would last.

 He also had a sword fight with Eliana, with a little help.
But it was something they both enjoyed very much.
I am sure you can see it in his face.

 Liam enjoyed more play. He likes being lifted up and down. Something that I am sure Casey is happy about this because he does it to him constantly.

 On the 10th Liam had a last appointment with Ophthalmology. Nothing has changed. Glasses won't help just helping him adjust and use the vision he has.

 The most thing that worried me about January was our move. Traveling with Liam would be a struggle. He did well for the first 8 hours. After that it became difficult but we survived.

December

Liam has been doing such a great job with his head control recently.
We finally adjusted his high chair to sit him up a little more.
He scares me at times but he does a great job sitting there.

He is able to control his head much better and for longer periods of time.
Two weeks ago he could only sit for less than a minute before he was tired.
Today he can last for several minutes and we don't really have to support his upper back.
He can also last longer sitting against us.
In fact, today at church he sat against our chests for half of the hours.

 

On December 18 Liam had an appointment with Urology.

When he had his MRI they spotted Liam had both Kidney's inflamed.

They wanted to keep an eye on it so he had a second ultrasound since then.

One of his kidney's is still inflamed but the other one seems normal now.

Dr. wanted to make one last ultrasound in a year just to make sure.

He would rather be safe than sorry.

As you can see he did not enjoy it but we are glad he is doing great in every way.

 

I also finally decided that Liam needed a haircut.

His first haircut was back in March.

I haven't cut it since then.

His first cut I buzzed him because it was after his first surgeries.

I should have cut it once again in July after his surgery in June but it was a small they buzzed that I didn't bother.

But since he has become better with sitting I decided to take advantage.

I have cut hair for over 7 years and worked at a kid's salon for 3 years.

There I learned so much including cutting a crying child's hair within 10 minutes.

So it wasn't too bad cutting his hair.

He looks like such a big boy now.

 



Look at me now...

Even though there has been so much going on in our home
we still make time for Mr. Liam.
But we finally took time to capture this on video.
He is getting better with controlling his head for longer while sitting.
In the past as soon as we sat him up he was not happy.
This time he can sit longer and most of the time he doesn't fuss.
I still have to hold him up and help with his chest and back but his head is all him.
This is a video we took after I worked him for a little while.
He has Early Intervention come to our home and we take him to Physical Therapy and Occupational Therapy to a Pediatric Rehabilitation but I must say that he is holding his head better because my mom was here during Thanksgiving Break.
She is a massage therapist and she worked his neck and gave him therapy.
So we are very thankful that she came and very happy that they will be receiving us into their home in some weeks!!!
Take a look.