We got the genetic results back from our poor little baby girl today. She had trisomy 15.
I won’t try to expound on it because I don’t know much at all except what the Dr said and what I found on a quick Google search. The Dr said its incompatible with life, nothing we could have done would have prevented it.
I don’t know the exact statistics on a reoccurring trisomy or if our other miscarriage babies had similar issues, but the Dr said we can try again if we want after I have 1 regular cycle and return to baseline. He also prescribed Femara ×3 months. In the past, I didn’t ovulate on Femara, so idk if I will take it but I like that I have it on hand.
He ordered lots of labs to have a new picture of where I am now with hormones and A1c, ect. We also went ahead with karyotyping on me today. Matt should have his done next week, Lord willing. It’ll be good to know what, if anything, we could be passing on to our children. It will also help us plan a better path forward, if we do decide to try one more time. It’s tricky….
I feel a lot of peace and closure now, having an answer for this loss. And a name. May God guide us forward. ❤️
I’m struggling with knowing how much I want to post in this space about my kids and other personal details. So, for the time being, I think I’m going to move to password protected posts for the more personal things.
Family, friends and longtime followers, please feel free to reach out if you would like to access this content. 🙂 I have posted an update today which requires a password.
I should be announcing that another baby will be joining our family by Aug 21st, but instead I’m writing about another miscarriage. While I should be over 11 weeks now, I am instead 2 weeks post Manual Vacuum Aspiration.
I drafted updates throughout the beginning of pregnancy, which will be retrodated and posted at some point, hopefully. In short, aside from a massive subchorionic hematoma, which was not the cause of the miscarriage, I had what seemed to be a healthy pregnancy up until the baby’s heart stopped beating. I had ever increasing morning sickness, requiring anti nausea meds, just like all my healthy pregnancies. My betas doubled beautifully. There was never an indication that anything was wrong. I took all my meds from the start… Even my dr was baffled by this loss.
Ultrasounds at 7 and 8 weeks showed a healthy heartbeat at 145 and 176bmp. Baby was measuring behind by 2-3 days and then 3-4 days, which did concern me. Even if my ovulation date was off by a day or 2, it still didn’t seem right to me. The baby was measuring 8 weeks 1 day when it passed away at 8 weeks 5 days (we think).
How I wish I’d taken a better picture. This was my first real belly pic. Taken right before leaving for my appointment where I found out baby had passed.
I went for an ultrasound at 9 weeks which showed the heart had stopped, the hematoma had mostly resolved and everything else looked text book perfect.. the sac and the placenta etc were all perfect. However, the yolk sac was measuring 5.3mm at 7 weeks 1 day and 5mm at 8 weeks. Google suggests that may be a risk for miscarriage, but the Dr was never concerned about it.
Matt and I heard the heartbeat once at home with the doppler around 7.5 weeks, but after that I could never find it again when I tried to listen before my 9 week appointment, which ended up being a bad sign. I felt strongly going into my appointment that the baby was gone, and it was. Therefore I wasn’t surprised when the Dr said there was no heartbeat, but I was devastated.
We had opted to find out the gender with a dna test at 7 weeks. According to that, baby was a girl. We are waiting for results from genetic testing we had done which will confirm the gender and tell us (hopefully) what caused the baby to stop growing. She looked so perfect. Little arms and legs already visible. She was even moving around at the 8 week ultrasound! We loved her so much!!
Two days after finding out our baby had died, we returned to the hospital for an MVA. I opted for this as it gave us the best chance of getting genetic testing done successfully. With my last loss, I wasn’t able to save enough tissue for genetic testing, and I found it severely devastating as we had no answers and no closure. This was our 8th loss that I know of and we really need an answer as to why we have suffered losses so many times. (This was the latest loss we’ve had. 2 chemical pregnancies, and 6 losses between 5-9 weeks.) If the genetic testing doesn’t reveal an answer (and maybe even if it does) my dr suggested karyotyping on Matt and I. I want to because I’m an information person, but we shall see.
The night before MVA
The MVA was painful, despite being sedated. But thankfully it was quick. I had been experiencing low back pain and cramping like early labor the entire day previously and on the way to our 6:30am appointment, so I think the miscarriage was about to start at home. I’m glad I didn’t have to experience that on my own as the last miscarriage at home was so upsetting for me. The hospital staff were so kind and good to us, letting us have an ultrasound on their new, best machine and printing us lots of pictures of our baby for a keepsake.
Following the procedure, I had after pains like mild labor contractions, not just cramps, off and on for 6 days. The bleeding was never heavy, but would pick up and slow down with the contracting. On days 4-6 I passed a lot of clots, then the bleeding finally slowed and has continued as spotting since.
Next week I am supposed to have a follow up with my Dr to discuss where we go from here or if our journey will be over, bookended by infertility at the beginning and recurrent pregnancy loss at the end. I want to have a healthy pregnancy and living child again, and our families support that and our children want that. But it’s out of my control. I am afraid to miscarry again. I feel like I’ll regret not trying again but if I do try and fail… I don’t want to think about that. I’m getting older also and don’t really want to try past 35, which is next year. Only the Lord knows what will be. It’s in His hands.
I’m so thankful for my kids, more and more every day. Life is so precious. So delicate. I miss my lost babies so much. 😞
Written 1-6-23. Updated 2-2-23. This pregnancy ended in miscarriage at 9 weeks.
Ok, I think I haven’t posted since before 5 weeks, so there’s a bit of catching up to do…
At the beginning of 5 weeks I had pretty consistent queasy level morning sickness. Towards the end of 5 weeks, the nausea pretty much disappeared and I had a bit of a moment on Christmas Eve where I cried wrapping presents and emailed the Dr to tell him that all my symptoms had been gone the last few days. Then I went to bed, praying, and woke up on Christmas morning, quite nauseated. It was not as magical feeling as it sounds, haha, but I was quite relieved that maybe things were still going strong in there. (and emailed the dr again to disregard my message🤣) The increasingly uncomfortable nausea has been my constant companion since then, except when I’m asleep. However, today was the first day that I had to take 2mg of Zofran in order to remain upright without throwing up. I’ve been getting by with b6 throughout the day and doxylamine succinate at night. Matt thinks I’m crazy to be willingly doing this again. Maybe I am. But like I tell him, it’s just part of the process. It’s just a season. It’s not forever.
At 7+1 we had our first ultrasound appointment. Our regular dr was out of town, so his colleague kindly saw us. Matt was able to get off work early and go with me, and we had a date at a nice little sushi place afterwards. It was amazing to see baby looking good and measuring 6+5 with the sac measuring right on dates at 7+1. (I’m pretty sure that the baby may have been cheated by a millimeter in the measurement, but either way its within normal limits.) Heartbeat was a strong 145, tho this dr doesn’t try to listen till farther along.
I was disappointed but not surprised to find out that I have a massive subchorionic hematoma. It’s almost the same size as with Destin. His was 33×20mm. This one is 39×16mm. For comparison, the gestational sac was only 22mm. So this sch is literally almost twice as big as the gestational sac. Sch can have good outcomes, and many do. Unfortunately when its this large in proportion to the pregnancy, it’s a bit touch and go. Mine with all 3 of my youngest were not an issue, so hopefully this one will heal quickly and beautifully. With each subsequent pregnancy I have a larger sch than the time before. I don’t know why I repeatedly get these and it definitely adds a huge degree of stress that wasn’t there prior to the ultrasound. I’m trying to remind myself that I hadn’t changed anything about my activity level prior to this information, and the baby was still growing well. I was still lifting over 40lbs on a regular basis throughout the course of my days. I’ve stopped lifting as much since I’m on lifting restriction now but I can’t really go on bedrest or anything drastic. I just have to hope and pray that God heals this sch like He did the others. I am already taking progesterone 2x daily at 600mg, which is one recommendation. The other supplement I’d never heard of being used for sch is alpha lipoic acid. It’s been studied and found to resolve sch faster than progesterone alone. So, I’ve ordered some and it should come tomorrow! Other than that, we wait and pray. The Dr asked me to come back in 1 week instead of 2 so we can keep an eye on it. It’s in the Lord’s hands.
On another note, at 7+2, I took the gender blood test that I’d ordered on sale at Christmas. It was fairly easy to use but I can’t imagine how you’re supposed to keep from contaminating it with male dna from the environment. I’ve decided I don’t trust any result I get because I accidentally dripped water from my hands into the box and right on the bag that the sample itself goes into. 😅 So, if it comes back boy, it’s contaminated but if it comes back girl (be serious) it’s too early. 😂 But, Lord willing, we are only 5.5 weeks away from being able to do the elective ultrasound for gender anyway. 🙏 This test is fun in the meantime. I should have the results the day after tomorrow!!
We made it through the Christmas parties without anyone suspecting, or at least nobody asked. I’m hoping we can make it a few more weeks. Mainly because of the sch. I definitely don’t want to tell the boys while that is looming so ominously. Oh Lord, please make it absorb and resolve quickly! In Jesus’ name. 🙏 I’m surprised nobody asked though because I think I look way poochy. I mean, the pooch never really went away, and maybe that’s a good thing. Ppl are used to me just being chunky at this point. But it just has a higher, maternal look now. Like the indent where my c section scar is has filled out and is round now. I’m not sure if I’ve actually gained any weight. I don’t see how, if I have. I’ve been too sick to eat like normal. Lots of thought goes into what will stay down. 😅
Other symptoms: altered sense of smell and taste, nasty taste in my mouth, more run down/tired than usual starting around 6 weeks, getting up to pee at night a lot, tossing and turning at night, always so freaking cold!! I haven’t been able to stay warm in weeks!
Dear God, thank You for entrusting us with this precious baby. Please heal the sch and help the baby to be safe and happy in there. In Jesus’ name, amen.
Written 12-18-22. Updated 2-2-23. This pregnancy ended in miscarriage at 9 weeks.
Tomorrow is 5 weeks, Lord willing, so just a quick recap.
On 13dpo I had my hcg and progesterone levels drawn so I could start care with my Dr. The beta came back at 103, which is good. The progesterone actually never resulted due to insufficient sample, or something. On 16dpo I had the second draw with beta of 366 and progesterone 20.4. The Dr was satisfied with these results, so he had me schedule for Jan 3rd at 7+1 for ultrasound. I’m on my shots and progesterone supplements, 200mg am and 400mg pm.
My main symptoms this week have been extreme thirst/cotton mouth. Waking up to pee several times a night and guzzle more water because my throat is so insanely dry. Also my nose is stuffy and throat is irriated in the mornings. Restless legs/feet is already starting also. I’ve had days with very little queasiness and days with periods of motion sick feeling. Metallic taste in my mouth. Heartburn. I’ve still been able to drink coffee but this morning I couldn’t finish it. Cramps off and on. Suddenly covered in acne, ew. Absolutely freezing cold and cannot get warm. Usually I’m always hot and we keep the temp in our house 67°, but right now I’m bundled in 2 layers of socks and my heavy bathrobe most of every day.
So, my starting weight is 160-164, depending on the day. I’m watching my carbs and sugar intake like crazy because this is 12+lbs above my starting weight with Destin and I haven’t been watching my weight well because of breastfeeding and not wanting to tank my milk by losing weight, which I’ve done before, sadly. Destin weaned himself in Oct though. So it’s all good but I do need to watch my weight gain.
We are really busy getting ready for Christmas, which I’m thankful for. Hopefully time passes without stress before the ultrasound. I’m trying not to think too much about everything. My main priority is getting through Christmas without anyone finding out. My mom saw my bruises the other day and asked if I was on my shots and pregnant. I just told her we’ll see! I mean, she could tell I was by my answer but also that I didn’t want to talk about it yet. So she didn’t ask me anything else, which was probably hard for her. I just feel incredibly scared to talk about it, so I haven’t told anyone at all, except Matt and the Dr, of course. It feels so delicate and fragile that I just can’t even think about telling anyone yet. I don’t even know when I will want to. After a couple good ultrasounds, Lord willing? I don’t know. Obviously my stretched out belly can’t hide a baby for long, especially from the boys. I’m also worried about having another sch. I’ve had increasingly more severe sch with each of the last 3 kids, so I’m definitely worried about that happening.
I ordered a new doppler this week. My sister is borrowing mine and I don’t want to ask for it back while she’s using it, so I figured I’d just get a new one.
Dear God, thank You for this special baby and the life You’ve given it. Please protect and sustain it’s life according to Your will. Please help us to get safely and happily to a healthy full term birth. In Jesus’ name, amen.
I’m writing this in December in the early days of pregnancy, with the hopes that by the time it posts, I’ll have posted a happy announcement.
UPDATE: This pregnancy ended in miscarriage at 9 weeks, but I’m still publishing this for my memories.
Ok, so my experiment started at 9dpo when I decided to test with the only 25miu Wondfo I had. And this test had been around for awhile, it had even left my possession and done some traveling and come back to me months later when the person I gave it to ended up not needing it. So it was a well traveled test and therefore the grayish shadow that appeared couldn’t be trusted. 😆
If you don’t see anything there, don’t feel bad. Neither do I. Even in real life, it was very questionable if there was actually a shadow or just my eyes playing tricks on me.
But thankfully I had several leftover internet cheapie tests laying around, and thus began my test comparison experiment.
I had one Easy@Home 25miu which I think was expiring this month. I pulled it out of the wrapper and it had some defect on the edge of it, so I decided it wouldn’t be trustworthy but I dipped it anyway, just cause. (smu, for those wondering) I also had 2 EZ Level 25miu tests (which I’m pretty sure are made by Pregmate, but I could be wrong) and a few One Step 10miu tests which I’ve had forever and usually don’t use them because they’re ridiculously narrow and I can hardly read the results. But they were still in date, as were the EZ Level tests. I also had a brand new pack of Wondfo 10miu that I had just received the day before.
So I dipped them all and waited, expecting nothing. This is what I got:
Eyes that are trained to the faintest of faint lines may be able to detect something on these, Especially the Easy@Home. If you don’t see anything, don’t feel bad. They’re near invisible. The One Step 10miu had absolutely nothing at all. EZ Level always seem to have a grayish line for me, so I certainly couldn’t call that a positive.
So, as you may or may not be able to see, I needed to test with something “trusted” in order to confirm. This is when I had to think up an excuse to go get some more tests without tipping Matt off just yet. Under the guise of finishing Christmas shopping, which was necessary anyway, I grabbed a box of Clearblue Early (25 miu?) and a box of Clearblue Digital (website says 25miu in the USA), *just in case*, and the First Signal $.88 tests which have never failed me. It was late afternoon/evening by the time I took these. These are the results…
At first glance, it’s negative. And I see nothing in this picture. In real life there was a line that may have literally just been an indent. I certainly wouldn’t have called it a positive. Maybe a reason to retest in a couple days but not a positive.
The digital said “Not Pregnant”, so I wasn’t sure what was up at that point. But I still had the Fist Signal, so I tried it later in the evening. *It’s important to note that I’d been basically dehydrated all afternoon, so the Clearblue was with probably the most concentrated pee.*
Like, that’s not even that hard to see. I feel like it’s a decent line, really. So, these tests are STILL my favorite, the most sensitive apparently, and the earliest clear positive result. $.88 tests for the WIN!!
Of the internet cheapie, Easy@Home was the winner. I wished I had more than one, for progression. But I did continue the next day (10dpo) with Wondfo 10miu and One Step 10miu and my last EZ Level 25miu.
Wondfo gave an easily visible line I wouldn’t have considered the One Step to be positive, but there was definitely something thereEZ Level gave an even better line than Wondfo
On 10dpo I also used the second digital test.
There’s no denying that!!!
On 11dpo I used the last Clearblue Early, just to see if it had progressed yet and, wow, yeah there was a nice dark line! I also used a Wondfo 10miu and OneStep 10miu.
So I think the Clearblue and Wondfo are actually close to equal strength at this point. Now I’m wondering what my actual hCG levels were! The One Step was obvious but still faint. So I do not recommend those since clearly you can find out sooner on tons of other brands. OneStep at 11dpo
First written on 12-9-22. Updated 2-2-23… this pregnancy ended in miscarriage at 9 weeks. 😞
I’m prefacing this by saying, I like to think that Matt and I are rational people and obviously we know that 5 kids is more than the socially accepted “normal” limit. (Believe me, we are aware! 🤣) Also I think that because I have 9 siblings, 5 kids isn’t as overwhelming for me as it might be for someone else, and that’s just how it is.
Given the surprise pregnancy in March 2022 and the tragic loss that resulted and left a void, I couldn’t reconcile in my heart to just be done without giving a chance to the future I’d grown attached to in March. And I knew also that it was basically now or never as the age gap between Destin and any possible future baby was only getting bigger with each passing month and I definitely prefer them to be close in age, personally.
Therefore in Oct, after months of discussion and prayers, we took a break from preventing. I intended to not try but not prevent for 3 cycles. Then if nothing happened, I’d at least know we kinda gave it a shot.
First cycle, nothing. No surprise there.
Second cycle, 9dpo, I woke up one morning and decided to test. I wasn’t planning to test yet but Matt brought it up and I was having some pretty suspicious *symptoms for the last 2 days (which really means nothing because I get symptoms before AF like every month, including nausea,) but I figured why not. I had a few old internet cheapie tests in the closet, one expiring this month and a new pack that had just come in the mail the day before.
The first test had a shadow of a line but I felt no excitement over it because it truly didn’t look positive. Just to prove to myself that it was just an old, expiring, untrustworthy test, I dipped some of the other assorted ICs and got a faint shadow on 4 out of 5. At this point, I felt like maybe this was a real positive? But maybe not? I wasn’t sure.
I needed some “real”, “official” tests, so I took Zane with me to finish up Christmas shopping and grab some legit tests. In the afternoon/evening, I tested with the shiny new tests. I was rather surprised to see the Clearblue pink dye test come up with nothing more than a faint faint faint, maybe slightly pink shadow, which really could have just been an indent. Honestly, it was basically negative. Likewise, the CB digital was also “Not Pregnant”. I was so confused by then, maybe the ICs had been wrong? So I tried one more… the old faithful $0.88 First Signal test. And it was positive! Not sorta, not kinda, not just barely, but actually a real legit, “yes I am”, positive!
Well, it was more impressive in real life. 🤣
Subsequent internet cheapies and a second CB digital the following day confirmed, yes indeed, there is someone growing!!
Call me dense but every time this happens I’m just like HOW????!!! I mean, 5 years of really trying – timed ic, clomid, iui, ivf.. how does it become “We stopped preventing for 2 months and we’re pregnant!” All I can tell you is, only God!
And of course I feel all the emotions… I haven’t forgotten what happened last time. I feel really guarded. But I’m also at peace at the same time. I’m not oblivious either that yes, we do have so much going on! Getting Quayd to therapy has become my full time job. I also homeschool, 5 days a week! There’s cleaning, cooking, getting everyone to all the places they need and want to go. There’s relationships with God and family that need cultivated and tended… with Matt and I and between us and the kids etc. It’s a lot!! It is! Sometimes it’s like, eek! But it’s also really good!! And then today one of the boys started rambling, TWO SEPARATE TIMES, completely of his own accord, about us needing to have another baby and what he hoped we would name it etc and it just confirmed again that, yes, this is right for us. It’s not for everybody and I get that. But I also hate feeling the pressure from everyone to be done because it’s “too much” (you’re not the one raising them! Ok?) or it’s “too many” (really? Says who? Who decided the perfect acceptable number of kids that you can have before you’re a *weirdo*?) It feels perfect to me, so there’s that. 😉
Anyway, moving on, I am somewhere around 11dpo now. I assume I’ll need labs soon to confirm. I have started my usual meds and whatnot. I’m just trying to keep as calm as I can and just take it one day at a time. I’m happy with each test that is darker than the one before, showing that the tiny person is getting comfy, I hope. I’m in this with God!
*symptoms* dry cotton mouth, excessive thirst, peeing a lot at night, queasy, LESS acne and rash than I usually have before my period, pelvic heaviness/soreness at times, cramps at 8dpo and an intense period of nausea at 7dpo which may have been unrelated.
Warning: this post will be full of triggers… miscarriage described in detail. Please do not read if you will be upset by it.
November is here and it’s harder than I’d hoped. I should be due this month. November 26th. I should be 36 weeks pregnant by now. I should be having Braxton Hicks and restless legs and pelvic pain keeping me up at night while I anticipare the arrival of our baby in 2-3 weeks. But instead I’m up tonight with waves of still present grief, so I decided it’s time to write it all out.
March 5th… headed off to Florida for our month long respite from winter. I neglected to pack my pregnancy prevention because I didn’t think I’d be ovulating while in Florida (pcos). Turns out, I was wrong.
March 16th. I’d been at the dollar store and grabbed a couple pregnancy test for literally no reason. I just saw them and bought two. I knew we’d dtd without prevention and if I’d been ovulating, I should be 11dpo. So I took a test, just cause. I couldn’t believe my eyes when it came up positive. I was in so much denial, I really thought it was faulty. So I took the second one. It was positive too. They were super super faint and I was just like, well, probably a bad batch and just weird or something. But the next morning I had the urge to go get another brand. So when that came out positive too, I had to belive it. But honestly, it didn’t really sink in until I took a digital test later that day while at the park with the kids. I sat at a picnic table while they played and set the test, that I’d just taken in the restroom, on the table and waited the 3 minutes for the result. Finally, I believed it. Honestly, it had felt terrifying and slightly unsettling before, but now it felt absolutely perfect. I was just awash with peace and love.
So, we enjoyed our vacation with our little secret baby on board (we didn’t tell the kids yet) and picked out a name and took pics on the beach and designed an announcement photo to send out after the ultrasound. I added the sneak peek gender test to my online cart so we could tell everyone the gender with the pregnancy announcement. Matt started shopping around online for a new vehicle, we reconfigured the kids’ rooms in our minds… it was all perfect.
At 5 weeks 6 days, I booked a super early reassurance ultrasound at a boutique. I wasn’t having morning sickness anymore and I had a nagging worry that things weren’t progressing properly. My dr had sent scripts into the pharmacy in Florida and I’d been taking my shots and progesterone etc, but something felt wrong. Knowing it was probably too early for a conclusive ultrasound, I hoped maybe we’d see some reassuring signs. There was sac and what looked to be a yolk sac. There was no obvious fetal pole or heartbeat, although we thought we did see a fetal pole briefly. The ultrasound was abdominal, so the sonographer apologized that it was just too early but everything looked good. I felt somewhat better but just didn’t seem like I could shake the thought of something being wrong, due to my morning sickness being gone while usually I’m sick as a dog and on meds.
6 weeks 2 days. We’d gotten home the day before and straight away I went for an hcg level check. It was only 9,000. It could be ok, but I knew it wasn’t. I went in that afternoonfor an ultrasound and was devastated that the pregnancy sac had collapsed and my body hadn’t recognized the loss yet. I was told it would be a heavy period. It wasn’t.
I don’t share this bit to scare anyone, but this was my honest experience. 6 weeks 4 days, I started bleeding. At 6 weeks 5 days, I passed a lot of tissue while in the bathroom at the bmv, of all places. At 6 weeks 6 days, I went to bed with a low back ache and cramps but I thought things were about over. The next morning, when I should have been 7 weeks, I woke up with cramps that soon led in to contractions coming every minute or so. Nowhere near as painful as full term labor, but uncomfortable and it scared me. I went to the shower and wanted to be alone. After awhile, there was a gentle urge to push. Then a very large placenta, for my dates. Still a mystery and the Dr even sent it for testing because apparently it shouldn’t have been so. But it was. And it was a horrible and scary and devastating experience. I cried for days. I was told it would be a heavy period. I wish I had been prepared.
The grief felt really immense at first and like it was consuming me. I functioned for my kids, but it was hard. Then I became more functional and spent less time hiding in the shower to cry. I could go days without crying, I could even feel joy again. But I never forget my baby. It’s as if I’ve been mourning the collective losses of all my babies that I’ve lost but didn’t get the same chance to bond with. It’s been hard. Some days I think I’m ok. Other days, I know I’m not healed yet. Honestly, I know it’ll always hurt. This summer was awful in and of itself, in many ways, and not a time to consider purposely getting pregnant. But I wish I still had my baby. My heart aches for what could have been and I’m sure now that I do want another baby, but I don’t know what is best for our family. I wish … I just wish I hadn’t lost it. It was so perfect. I’ll love my little one forever, and treasure them always. ❤️
I’ve wanted to write this for weeks now but haven’t really known what exactly to say or even how to share. This is all so new for me that I’m not even entirely sure how to word it all, so bear with me. Hopefully I can explain in a way that makes sense.
Quayd had his speech evaluation in July, after many months of waiting to have an evaluation done. I had done just a tad bit of research on speech and language delays during the wait and had stumbled across a fairly uncommon speech disorder (not a delay) that sounded just bang on exactly like what we were observing with Quayd. Obviously with no previous experience with speech delays/disorders, I had to wait to see what the professionals would say, but I kept the name in the back of my mind. So thankfully it wasn’t too shocking at the end of his evaluation when the SLP said she was leaning toward this particular diagnosis, but that the official diagnosis couldn’t be made until we had multiple sessions under our belts. We are at the point now, 3 months later, where the diagnosis is official. Importantly, Quayd does not have any delays with language – meaning, he understands everything we say, can follow directions precisely, he knows exactly what he wants to say to us – the only barrier to communicating freely is an inability to produce clear speech.
Therapy happened to begin on Quayd’s 3rd birthday and he has gone mostly 2-3 times weekly ever since. Currently he has 2 appointments a week, one is virtual and the other is in person. The outcome for this speech disorder varies from person to person, therefore it is unknown what to expect for Quayd’s expressive speech over time. Nobody can say whether he will be able to speak clearly someday or how long it could take to see real measurable progress. Currently Quayd has very few words that we recognize and even then, they are distorted and rare. He HAS successfully said Mommy a few times now and it was absolute heaven to hear it!! Finally!! I was so overjoyed! It requires a lot of effort for him to say it, and therefore he has settled on calling me “Ma-ee”, which is still absolutely beautiful. It’s been a little over a month and I’m still getting used to hearing him address me by name. It’s amazing! He also has approximations recently for no, daddy (dah-ee), yeah, I, hurt (ur), fish (bur), more (bo), nose (bo), pee and a few others. I would say that without context, we understand maybe as much as 1% of what he is saying. With context, we can make out a little more of what he is trying to communicate. Maybe 5% and mostly in the form of approximations.
We have begun to implement “aided language boards”, which are laminated pages with common words and items that he can point to in order to tell us what he wants to eat, play with, how he feels emotionally, and what areas of his body hurt, what color he wants of an item etc. He LOVES his boards. We have a whole binder of them, and we add to them constantly. He’s started taking them with him when we go places. They have really helped him feel empowered and he gets upset a lot less now. He is also learning sign language. He is a very fast learner and picks up on signs with only a couple demonstrations. Quayd is desperately eager to be understood! (I’ve noticed at his appointments that how he communicates depends on who is doing the therapy. One of his SLPs does a lot of sign language with him and he primarily talks to her with sign. If he’s not sure that someone understands sign, he grabs his boards.) Next week he has an appointment to trial an “augmentative and alternative communication device”, which is to say, a tablet that he can use to speak with. If he does well with it, which his SLPs are very confident that he will, he will Lord-willing have his own device in the next few months, after training and insurance processes.
I could go on a ramble about my emotions regarding watching my child struggle and work so hard just to talk, but I won’t. I do let myself feel the feels for a bit here and there but I’m most beneficial to Quayd’s support when I am in positive focus mode. The emotions for me often center largely around worries about Quayd’s feelings concerning this difficulty, and his inability to share those feelings with me yet. We see him feeling sad and frustrated at times, and he is increasingly aware that people don’t understand his speech, to the point that he doesn’t attempt to talk to anyone outside of immediate family very often anymore. This is heartbreaking to watch. I am grateful for advances in technology, like the AAC talker. And I’m thankful for good old fashioned aided language boards and for sign language. Any form of communication is a blessing, and while the end goal is clear expressive speech, as long as Quayd is able to communicate with ease, I am happy and thankful and relieved!
I do have immense hope, moving forward. There ARE success stories in abundance, we’ve started therapy at a good age, Quayd has shown huge progress with the aided language boards and sign language. I believe he will learn and adjust quickly to using the AAC talker and maybe once the pressure is off, he can work more on his expressive speech. Having the successes of him saying “Mommy” and “no” and “uh-oh”, while being just minimal progress, it shows that he is working very hard and giving 100% to developing his speech. As he gets older it will likely get much easier to work with him, vs how it is now, trying to keep the attention of a 3 year old for an hour speech session. Yes, I do believe he will progress well. He has the full support of his family and brothers who love him so much and are above and beyond wonderful at helping Quayd communicate well. Whether they run to bring him his binder of words, or practice sign language, or play with playdoh together while making long vowel sounds, these boys have stepped up to the plate to make this journey a whole family support effort. I am so blessed to watch these loving brothers in action. Sweethearts, all of them. God is good!
Literally a first time mom, sharing all that happens during my pregnancy. My posts are real and true examples of a mom on her first journey with her first baby!
Journey For My Baby 