Around 6mos before his 3rd birthday, Thorin starting speaking words. Well now, a couple of months after his 3rd birthday he is repeating words, doing flash cards, saying more sentences like : 'mommy I'm tired I'm going to sleep in my bed now', 'it's mine not your's', 'my turn to kick the ball', 'bye Tanner I love you', etc... you get the picture. He is forming longer sentences that make sense. At times, others can't understand his speech but we have come along way from nodding yes or no and pointing. He tells me a list of items he wants for his next birthday and talks all day long. Even though his speech/words are getting better and he talks all day long with me at home, he chooses when and if he speaks in public around others. In cradle roll class before church a Bible lesson is taught through a series of repeat after me. Whether leaning big words, Bible verses, songs, or praying. Last Sabbath which was the 11th of Feb, 2017, Thorin repeated his 1st prayer with the other kiddos and my heart beamed with joy because he is finally getting to a turning point with his speech and speaking. I only know he will grow more and gather momentum as he progresses with practicing more. Laryngomalacia is a difficult thing for a parent to deal with and even though his was on the milder side, the effects where still very much there even after he grew out of this airway defect. I keep families who are still caught in their journey in my prayers always. And today I am sharing a praise with you because it has been an issue with his speech and he is finally catching up. And of course he repeated a prayer in public with his Sabbath School teacher and friends. That's a big deal!
Thorin is now around 2 1/2 years old. He has become quite the chatterbox! Praise God! We knew his speech would be delayed due to being born with a mild form of laryngomalaica and finally are happy to say his speech is taking off. He weaned himself away from his binky, which helped some. The words he does say have the correct sounds and pronunciations. Things he says: I want some, juice, cup, food, hug, in there, bubba (for brother), mom, dad, no, bubba did it (when they fight), thanks, Roxy (our dog), Hunter (our cousin), this is, Tanner (big brother), it's mine, stop it, my shoes, go potty, Jesus, oh look, bye, go bye-bye, oh cool, awesome, baby, papa, get bubba (from school), tickle toes, oh no, ow, let's go, ya, and some other words I'm probably forgetting right now. He is still expressive in his non-verbal cues, which fills in the gaps. He knows and understands what we are saying to him and will nod accordingly in his reply to us. He enjoys looking through books and is our fun-loving last little love.
As you can tell, Thorin is growing up. He will be 2 yrs old in December and we are so thankful that we haven't had much to report on. Although he has outgrown his laryngomalacia and stopped needing his reflux meds, this condition can cause speech and talking delays. He mostly screams and grunts, but is able to say a few words perfectly. These words are: what, huh, juice, ma, da, bubba (brother). Other words he can say in baby talk are ba boi (bad boy), tat to (thank you), ba go (bad girl re: puppy dog, she steals his binky). Other than that, he understands what we say and is very intelligent in knowing. He often shakes his head for yes or no and when I say to use his words he shakes his head no. All in all, we are pleased and very grateful for this condition being more on the milder side and these babies just take longer at developing their larynx tissues for eating, swallowing, and talking. He will get there!! We still keep babies/kids like Thorin in our prayers each day and pray that God gives them the guidance, knowledge, and support each family needs in keeping theirs breathing easy.
Today was our last visit with Dr. Colombo. He said he was going to miss seeing us but that Thorin is ahead of schedule for growing out of laryngomalacia. He also said to wait about introducing baby food until he is 6 months and since he is about to outgrow his dose of zantac we could move him to Prilosec at once a day but that would be between me and Dr. Winters (our family doctor) as no further appointments are necessary with him. I just got off the phone with Dr. Winters' nurse and will hear what he thinks we should do about acid reflux meds tomorrow. I an so over joyed and thanking God with endless praises for this awesome news. Thank you so much for praying for this journey and being there in support with our family. Much love!! Tomorrow is his check up with Dr. Colombo, respiratory specialist. I am eager to see what he has to say since I feel that Thorin is making progress and hopefully growing out of this condition. Something I am nervous about is introducing soilds. This is when most kiddos lose weight because they difficulty swallowing. Hoping adding rice cereal to the baby food will help him. Praying for a good outcome tomorrow. Thank you all for your continued prayers, love, and support for Thorin and our family's journey.
Wasn't too sure what this appointment would reveal, but Dr. Colombo said that Thorin has mild to moderate laryngomalacia and is more on the milder side. Praise God!! He asked about his choking episodes and they have been far few and in between but they do happen. I've counted like 5 or 6 since his stay at Children's for this diagnosis. The last choking episode was Sunday. I fed him, burped him, and elevated him in his bassinet. I walked down the hallway to get tape and scissors and came right back to find him spitting up like a fountain and then choking on the spit up as it was falling back into his mouth. I picked him up and patted his back. This shows how quickly something can happen so I stay close by him. Dr. Colombo also asked if spit up has come through his nose. Yes, like 4 to 5 times since discharged from Children's that I can recall spit up coming out of the nose and mouth making it difficult for him to catch his breath and I hold him up wiping his mouth / nose while patting his back. He isn't making the stridor sound as often and had only 2 issues during sleep in one night where he woke up catching his breath. Dr. Colombo said that from what I am reporting that he predicts that Thorin will be just fine and since he is cooing, grunting, and humming, he has a good chance of being able to talk and breathe. The doc also said that his problem is with the nodules on the back of vocal chord and predicted that with the Zantac he's been taking that those nodules are not as inflamed as before. His dosage of that med has been increased since he has gained weight. Our next visit is in 3 months and no more scopy's unless I report something unusual. Happy with our visit today. You know I am still learning about this condition and feel better sharing my thoughts, fears, and blessings with others. I keep every family affected by this condition in my prayers. For now, we keep doing what we need to and wait until our next visit. Thanks for keeping us in your prayers!
Thorin has his 1st check-up with our pulmologist / respiratory specialist today and I am nervous. I am so afraid because I know the extent of this condition through stories shared in a support group. The Bible verse going through my mind is the one that says cast your fears upon Me, so I pray that God will help us through this journey and thank Him for how good it has been going.
My Thoughts: Some babies have recently passed from this condition and others barely talk, can't talk, or use a speech therapist. It's hard to breathe and talk for some. Other babies are unable to keep food down and have a feeding tube in their nose and yet other babies have a feeding tube in their tummy. Some babies wear cpap machines because they have trouble breathing during sleep. Some babies have all of these things to deal with and yet there are other babies / kids who grow out of it, speak just fine, sleep okay, and keep food down. All anybody hopes for is to have a nice and easy delivery and then take home a healthy baby, I know I did. But taking home a sick baby has happened twice now for me and tho Anders' heart condition has gone good thus far, that fear of knowing what could happen is always there for me. This is the beginning still of our journey with laryngomalacia and it seems that Thorin is on the milder side of this condition now, but that fear of knowing what could happen will be with me too. My heart breaks for these babies / kids and their family's and all I can do is pray for them, these families I don't even know yet we are connected through laryngomalacia. Often times I feel like I failed my two younger boys, because they have things wrong with them, wandering what could I have done differently. You see, there isn't anything I could have done, it's just something that babies get. If I let my mind wander long enough, I feel like I am penalized for the sins and rebellion years as a teen and young adult. That verse in the Bible that says the children will pay for the sins of the father (mother, in this instance). I know that verse isn't stated correctly but that is the way I hear it. I know these are negative thoughts, but I am only being honest. It's hard being a mom of a baby with a serious illness. I leave my heart wide open sharing my vulnerabilities in search of someone, anyone who will pat me on the back and tell me "It will be okay!" We have been doing as good as we can here at home. He still has the stridor, wheezing and sounding congested but his lungs are clear. These sounds are just apart of the laryngomalacia. The stridor sound helps alert me that he is having trouble breathing so I can try and help him recover his breathing. I am watching him, actively listening to him, and keeping him close to me. His jaundice went away and his weight is back up. He is outgrowing his newborn clothes. He was 7.2 lbs at birth and got down to 6.7 lbs, but now at his last weight check was 8 lbs even.
Yesterday we had a med check for our oldest son Tanner (Thorin's big brother) and saw his doctor, Dr. Holland. I was going to bring Thorin so he could see him but since I drove I left Thorin and Anders with their dad (Dr. Colombo said the car seat is the worst place for Thorin and the angle it keeps him for his airway so I am still scared to drive by myself with our kids since I like sitting next to his car seat in case he has a choking episode). I told Dr. Holland about his laryngomalacia and our story about the diagnosis. He was interested and got his medical book out to look up definitions and had this explanation for me. Your trachea is in front and your esophagus is in back of the throat and the flap closes when you swallow. Take your pointer finger and stick it up (looks like a number one sign) now bring it straight down this simulates the airway open (finger pointed up) for breathing. When you bring your finger down it should be firm which closes the airway for breathing so you can swallow food. Thorin's flap is floppy always moving during breathing and swallowing. All I could think about was how amazing his explanation was to me and that was another son's doctor. God has placed the right doctors around our family and I am so thankful. He has had some choking episodes while in his car seat and when he does I just unhook his belt and hold him on my chest while patting his back. When he catches his breath I place him back in his car seat and buckle him back in. Don't know how I will feel comfortable driving but as for now we get rides so I can sit next to him. Other than all this his motto is "feed me, change, me, love me" and that I do. We got him a swing and he likes it but he loves being held and so we all take turns holding him. He made his first church appearance last week and is scheduled for his Baby Dedication on the 25th of January. |
AuthorAnthony and Elizabeth are the proud parents of Thorin. Tanner and Anders are the big brothers of Thorin. Archives
February 2017
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