walking

IF you haven't heard....Braxton has taken a total of 7 steps independently. This is really really good. But why am I still frustrated, disappointed, and discouraged by it all....? I've been struggling a lot lately--unspoken of course. So I'm taking a huge leap and about to vomit out what that struggle is. In exchange, I ask for your prayers.

almost 20 months ago (close to TWO years!) my twin boys were born weighing a pound and a half. I have NEVER denied the miracle that happened then and continues to happen. I give God all the praise for the success of their journey. At 6 weeks old, we were asked to "discontinue life support." The doctors all told us that they would be close to what we know as a vegetable. If you know my boys, you know that THAT is not what God had planned.

Xander is quickly closing the gap. He is probably around a 17 month old in gross and fine motor skills. Speech and language is still that of a 4 or 5 month old...but hoping that changes in the next few weeks when we get those hearing aids. cognitively, though, he is a smart little boy. Signing and really trying to express himself.

My time and energy...my sinful worry, is all focused to Braxton. This little boy has made amazing strides. He has always been about 3 months behind xander. He sat independently, later, he crawled later, and now he's walking later. However, his walking strides are not smooth. He has stiff ankles, legs, making it more challenging for him to do this with ease. IF it were up to him, he would choose to crawl or cruise the furniture his whole life. He CAN take steps though...because we've seen it. The physical therapist is ordering ankle braces to help give him a little more support.

On one hand I am SO incredibly thankful that my baby is NOT wheelchair bound, can eat and drink on his own, breathe on his own, cruise around, babble, laugh, engage wiht family and friends, cry, etc. But on the other (dreaded) hand, I see my son as different....I see his frustrations. I see he is left out becuase his brothers are faster and quicker (in all areas: gross,fine,cognitive). It breaks my heart. I start to question everything. Is this a picture of what his school age years will look like? Will he be fighting to "fit in" his whole life? Will he be physically able to be on his brothers sports teams or will he be on the side line cheering with a fake smile? Will xander be in a DHH classroom, Braxton at a different school, and caden at a different school?

I think it's easy and normal to think all these things....to worry about your children. However, I am convicted daily when this happens. My worry is not productive...it's also saying that I am not trusting that God got us this far, He has no plans of dropping us off now. I should know by now that He is not going to rip me off...but like I said...long story short. I'm struggling to trust HIM. i ask for your prayers for braxton, that he can gain the confidence needed to walk (i think this is also part of the reason why he isnt walking). I ask that you pray for his muscles...that they continue to loosen so his steps are fluid. (a year ago he couldn't even touch his toes to his mouth. now he can!) We go see the eye doctor in 2 weeks...his right eye still goes in and I know this can't make it easy to stay firm on your feet either. And lastly, I pray that I can remain faithful and trust that God's got my back. He won't let me down.... And if braxton will have a limp type walk, I pray that God will prepare me for that-- soften my heart to know that "normal" is different for everyone. I know these boys are here for a reason, and I KNOW God will use them for His glory. (he already has)... I still want what I want... when I want. ANother struggle..another blog. a whole other story. ;)


Thank you in advance for your prayers!

God had a plan

Throughout my adult life and more specifically, this past year, I find myself seeing God's hand on my life. I notice His provision, His protection and His love. That's not to say He wasn't apart of that when I was younger....I just didn't sit and reflect on it. God was already working, marking the path to my future, starting when I was just 7 years old (well, long before that really).

At 7 years old I met a girl, who later became "my sister". At the time, I didn't really know she was "different"; I didn't quite understand that she used her hands to talk because she couldn't hear. We were just two little girls doing what girls do best, Have fun. Before I knew it, we were no longer playing tether-ball at school, and having lunch together, but we were having sleep overs and play dates.

Jumping ahead...As I was applying for college and still not quite sure what I wanted to do with my life, I knew one thing was for sure. God gave me a gift to sign (ASL), and I loved working with children. Soooo, I decided to go into Deaf Education. Instead of play dates and sleep overs, my friend and I became roomates (I guess it is a form of a sleep over) :) Without my first introduction to the language and culture at 7 years old, who knows what career I would have led.

fast forward... While going to college I attended a church that had a pretty big Deaf population. On occasion I would sit with my Deaf friends. There....I met my husband. He was a fluent signer as well, interpreting the church service every Sunday.

Moving ahead 3 years... We got married and had three kids. I don't have to get into the whole preemie story, but its important to remind you that one of the risks of having a premature baby is deafness. We giggled when the doctors told us that. To us-- that wasn't a huge risk.

YESTERDAY, we took the boys to the audiologist at Loma Linda Hospital. This was their 3rd visit/audiological exam. We knew that they were showing signs of hearing loss; The tests themselves were showing a mild/moderate loss, and their language is very delayed (that of a 4 month old). Yesterday it was confirmed that Xander indeed needs hearing aids. It was shocking to find out, though, that his loss is more on a scale of moderate/severe (about 60 db across the board. 20db is normal). Braxton's test is next week, but pretty sure it's similar.
Caden, also had a hearing test yesterday. I went in thinking that his loss would have been the kind of loss that is easily fixed with tubes (conductive loss). Well that's what the ENT suggested originally. When in fact, after the exam, he has a true moderate sensorineural hearing loss (nerve/genetic). The doctor was adamant about getting him hearing aids ASAP. He does not need tubes after all. Tubes would do nothing for him. He was VERY impressed with his ability to complete the test and with his language skills. They did an exam that the do on 3 to 3.5 year olds. Being the first child, we were able to sign more to him and read a whole lot more. This has tremendously helped his development in speech and language.

Today.... I am SOOO thankful that God placed my friend Kelly in my life 25 years ago! I was driving home from the store yesterday and I had tears in my eyes as I was reflecting on how God has been preparing us to be parents of three (NOT ONE), but three hard of hearing children. There was a moment (literally just a moment) of sadness. Then I began to smile...God has been in this since day 1. As we start the next journey of getting hear aids and working through educational decisions, etc. I am confident that God will also be present--leading the WAY.

So this Blog entry is to Thank GOD...and to THANK Kelly Baldwin for being such a faithful friend. Both, opening up so many doors of opportunity for me (and my family).

SO PROUD

Forgive me, as I'm about to brag....A lot....about my son. :)

Caden has been such an amazing little boy the past few weeks. He has been so sweet to his brothers, using such great manners, really seems he's trying to practice obedience and make him momma and daddy happy. YES....he still has his "I'm 2 and will act like it" moments--

But I wanted to share how proud I am of him. If his brothers get hurt, he will go to them quickly, and kiss their head and say, "its otay." (often not saying the 'k's) If his brothers are crying in the car, he will reach over to touch them and say, "it's otay, we almost ome." When his brothers are fussing during their diaper changes, he will come over and try to distract them for me. (without being asked at times!). When we were at the doctors this week, he was using Please and Thank you a bunch, and spontaneously. The nurse was so impressed she walked back into the room and had to give him a high five and praise him for his sweet manners.

Phil and I have been AMAZED..literally, with caden's ability to throw a base ball(nerf style), dribble a soccer ball, then yesterday we were pitching balls to him, and the kid can HIT! I foresee travel ball in our future. ;) Till then...we will sign him up for soccer (AYSO) in the fall.

Love this little man....more and more everyday! He is such a blessing.

Caden's ears

As some of you know, caden's hearing test came back "abnormal". He has a mild to moderate hearing loss. Monday I took him to the ENT at Loma Linda. (luckily the insurance allowed us to go out of network to the pediatric specialist, due to the fact the boys also go there).

Caden's ear drums are slightly retracted (sucken in), but no visible fluid. SO he is getting some negative pressure when they test the inner ear. As my pediatrician warned me, the ENT's first suggestion was going to be, "put tubes in his ears". I asked if this was a guarantee that he would hear better, and she said no. Right away I then asked what the second option was and then the third. Second option is get his ears retested at Loma linda, then third option was hearing aids.

At this point, we are waiting for approval to get his hearing re tested at Loma Linda, with the same audiologist that his brothers have. (i really like him). Once we have those results we can make a more informed decision. As of right now, we are not going to do any surgeries. His loss is a mixed conductive/senori neural. This means that the conductive part (inner ear "issues") could be fixed, but then that would still leave him with a nerve hearing loss (thanks to genetics). Hearing aids are probably in his future as well.

If you know caden, you know a boy who talks a lot, and seems to have a wide range of vocabulary. He carries on conversations, and is a quick learner. After the results came back, however, I now see letter sounds that are missing, and notice him wanting the radio, tv, computer turned up, he speaks VERY loudly, and misunderstands me at times. To compensate, I have been using strategies you'd use on anyone with a hearing loss. One, being, look right at him and speak clearly.

Just like his momma...one on one situations and small group settings, you would never know he had an issue with hearing. The audiologist in LA said that you will start to notice the loss when he gets in school... so to prevent that we are taking action now.

Maybe loma linda will re-test him and prove the first test to be completely off. We'll see...
Hoping the referral comes back soon, and we can have this appt this month.

John Tracy Clinic (hearing tests)

Yesterday Phil and I took Braxton and Xander to LA, to a pretty famous place: John Tracy Clinic (JTC). It's a facility that educates and gives tons of support to parents of Deaf of Hard of Hearing children. (however they don't use the term "deaf". More on that later).

Per our audiologists suggestion, we went to JTC for a second opinion. I was anxious to get these tests done, because it was a play based test, vs the kind where the boys are sleeping (ABR). This test was suppose to give more accurate results. That is, if the boys cooperated. I'm not saying the visit was a waste....cuz it wasn't. However, the audiologist doesn't feel like she got thresholds (the lowest sound that they boys can hear). Her results actually showed worse hearing than the initial ABR tests taken at Loma LInda. Braxton was restless--very annoyed at the little ear phones he had to put in his ears. Xander did great. He fussed a bit then just sat real still playing wit the toys. He was so involved with the toys, he started to tune out the noises and not react to them. SO we took the toys away and then he seem to have gotten bored with the process of looking at the light up toys that were suppose to be associated with the sounds. (his attention span is SMALL).

SOOO.....now what. The boys will get another ABR, the brain stem test, before they get fitted for hearing aids. Although I trust Loma Linda, and really like the audiologist there, I think we are going to take them to H.E.I ( another famous facility in LA: House Ear Institute). They give the boys meds that knock 'em out in a deep sleep. Loma Linda requires us to starve them, keep them up, and then put them to sleep ourselves when we arrive to the appt. If you can imagine, that is not fun...for anyone. I rather drive to LA.

Hope to know more in a few weeks....Till then we are signing like crazy with them. THey are both signing "more", and xander is almost waving "bye".

First day of "school"

My boys...all THREE, attended the PIP classroom. (Parent Infant Program is an all signing Early Start preschool) Caden joined, because we weren't staying the whole time. And he did great! The teacher asked multiple times if we were registering him to also be apart of the program. (if you don't already know, caden has been tested as having a hearing loss as well. But further testing is happening on Monday. More on that later).

Here are a couple pictures from our first day. I won't lie....it was overwhelming. The kids are 18 months -2.9 years old. But they seems years older, because of the size difference and their abilities. The second time we went (yesterday), the twins did SO much better. They actually sat during circle time and seem a lot more comfortable. I think the key is a nap and food right before class. We will continue to go Tuesdays and Thursdays. I really think the interaction and exposure to typical developing kids will help them tremendously.

*notice how much smaller the boys look in these pics. The other kids did really well with them though. Xander, especially, was very interested in watching the other kids. I'm excited to see some growth in different areas.

Parent Infant Program

Braxton and Xander will be attending the early start program at my old job, California School for the Deaf, Riverside (CSDR)! We had our IFSP (a meeting to discuss goals and best placement for the boys) this week. The team decided because of their hearing loss and lack of language at this time, the boys would best fit the Parent Infant Program (PIP). It's a signing environment, but they do have speech goals and will see a speech therapist. I could not be more thrilled! We loved the teacher and the class has 7 other children ranging from 18 months to 2.5 years old.

I only have one concern...GERMS. It is the middle of flu season. They will be around multiple kids and a lot of germy toys. NOt to be paranoid, but I really don't want to go back in the hospital with one of them. I'm weighing the cost....language, socialization vs. the chance of getting real sick. I feel God tugging me and telling me, TRUST ME...PRAY for your little ones and let them grow and develop and experience what this classroom has to offer.

With that said, we will go in on Tuesday for about an hour to see the boys roam and check out the set up of the classroom. Then we will probably start going T/TH for a few weeks, working up to M-Th (8:00-11:00). I will (or my mom will) have to be there until they are 18 months old...then the goal is to drop them off. This will be soo good for them, because they are very (especially xander) attached to mommy.

So..here's the start of another chapter in our book of "life raising preemies"!