Speech Therapy Evaluation

I left the speech therapy evaluation today very discouraged. They want to see Nadia weekly for now, which doesn’t really surprise me. But I guess I did expect to have a better understanding of the process and goals after our appointment today, but I don’t.

The hour-long appointment was mostly spent as an interview, the therapist questioning me based on Nadia’s skills. I didn’t feel like I had a lot to say, other than, she squeals and cries, and that’s about it. We know she can hear based on her last hearing test before she was released from the NICU, but the therapist recommended another, which is fine, I’m totally not opposed to such, but I find it odd they want Iowa City to do the test… Again, fine, we are there all the time, but odd to me. Don’t they do hearing tests here??

The speech therapist seemed young, I’m not sure how much experience she has… She talked a lot to Nadia, to which Nadia basically just stared at her, or screamed and looked to me for comfort. And when I say talked to Nadia, I mean she made over-exaggerated sounds emphasizing the use of her mouth and lips, lots of motions with her hands, lots of expression, etc.

Our homework for the next week until we see her again:

  • Speak as much to Nadia as possible using lots of expression, lots of mouth movements, etc.
  • Mimic Nadia’s sounds back to her, giving her a chance to ‘take her turn’ to aid in the teaching of back and forth communication
  • Work to teach Nadia the signs for ‘more’ and ‘all done’
  • Repeat basic sounds, such as da, ma, and ba to Nadia over and over and over

I’m not at all opposed to teaching Nadia some simple sign language, as even Nora knows some basic baby signs, but I guess even the mention of such scared me. It made me wonder if the therapist fears Nadia will never speak… She did say that Nadia clearly has a voice, as she uses it to cry and such… I don’t know, just brought back a lot of fears for me, all the horrors of the brain bleed and lack of oxygen at birth. Is this all my fault? I’m so busy with Nora, Nadia doesn’t get nearly the attention Nora did at this age. Do I not work with Nadia enough? What am I doing wrong that Nadia needs speech and physical therapy, and Nora will probably start feeding therapy soon? I feel like everything is hitting me at once. I thought I was so lucky with my two preemies, that they were doing so well… I don’t want that to change. And all these appointments are wearing on me. The speech and physical therapy needs to be on different days, as they wear out Nadia and thus she doesn’t perform well at the second appointment of the day. And I can’t take Nora along, so once she starts feeding therapy that will be three appointments added to our list a week. I guess the bright side is I don’t work, otherwise I’d constantly be requesting time off.

Sticky

I hate to complain about the sticky weather, but can the humidity climb any higher?? Yuck. Feels wet just walking outside!

The girls and I ventured to story time at the CF Library this morning, well, actually, we went to meet a friend and her two boys, and just happened to arrive mid-story time. Nora was quite disruptive, but she seemed to somewhat enjoy watching the other kids. After that finished we stayed to play while I attempted an adult conversation with my friend. It’s always difficult with kids, but it was really good to see her. And nice to get out of the house. I stopped on the way home for a Happy Meal for Nora, which she is actually eating now. Surprise surprise. Maybe all the activity wore her out and made her hungry. Next will be her nap, as it’s after 1pm.

Update on that house in Hudson we made an offer on… Our realtor texted me last night that the sellers could now make 600k work. Interesting, since our final offer was 585k. I guess I’m giving up on it. It’s not that we can’t afford 600k, more than we, and our realtor, don’t believe the house is worth more than 585k, mainly since it’s outside of town. So the search continues. Maybe it’s a sign. Makes me wonder if God is trying to give me more opportunities to realize we need to move back closer to Iowa City.

Eric didn’t get home last night until close to 9pm. I’m not sure exactly when he finished his clinic in Ft. Dodge, but he made time to have lunch with his grandparents and mother after. It shouldn’t annoy me, but it does. As him having a late lunch/early dinner with them meant he didn’t start his 90 mile drive home until 5:30pm. He could have been home by then. And to make matters worse, he got a call from the ER on his drive home that he needed to come see a patient. Ugh. It’s never ending. I despise bedtime alone. Nadia is getting her top four teeth, thus she is always fussy, bedtime being no exception. I stopped reading to Nora in her room five times to go calm Nadia. Which never actually did calm her. Nora was finally in bed around 8pm at which point I just stopped fighting bedtime with Nadia and brought her out to play a bit more. In the end, it all worked out, but it totally stresses me out when both are screaming, both need me… I never quite know how to separate my time. Neither want to wait, Nora crying just as much as Nadia if I walk away from her. 

As for Nora’s eating, I’m going to call her pediatrician this afternoon and ask for a referral to feeding therapy. There is a therapist at the same location where I’ve been taking Nadia for speech and physical therapy. Ugh, the thought of going there three times a week overwhelms me, but… Nora isn’t gaining weight. I hate picking her up, she’s just bones. Even her face seems sunken in lately. Or maybe it’s just my imagination, I don’t know. Meals are just so stressful for me. I actually avoid taking her out places because it’s so stressful if events fall over mealtime or involve food. I hate this feeling. I’d at least like them to evaluate her.

Physical Therapy

Today was Nadia’s second visit with the Physical Therapist (PT). The PT was actually quite happy with her progress, although personally, I see no progress. Nadia still isn’t crawling, although maybe she is reaching to the sides for toys when sitting a bit more now than she was a week ago. Nadia will use both of her hands to reach and grab for toys, but she much prefers her right, and also leans very much to her right when sitting. I think the PT was going to review Nadia’s most recent brain MRI to see on which side the brain bleed occurred.

 

Homework for this week is more of the same… encourage Nadia to reach when seated and during tummy time, both to the sides and in front of her. The PT also suggested taking Nadia to a park to swing, as she suspects that part of Nadia’s issues are related to her strong dislike of motion. I guess I’m not sure how much I believe this, as we’ve had her in swings with a lot of movement at home since she was born… I have noticed that Nadia prefers not to be held when drinking bottles. She much prefers lying on the floor or propped up on a pillow. Is that weird? Anyone else’s child not like being held when eating?

Nadia’s Physical Therapy Evaluation

Nadia’s Physical Therapy (PT) Evaluation was as expected today… The therapist was super, super nice and helpful. The environment was super relaxed, and I didn’t take Nora, as requested, so I was able to fully focus on Nadia and participate in the exam.

 

As expected though, Nadia is slightly behind in meeting first year milestones. Not to the point where she can’t catch up, but thus behind according to this particular PT for her adjusted age of about 8 months now. The good news though, is that this therapist doesn’t see any reason why Nadia won’t at some point function as a completely normal child regarding such milestones. This was huge for me to hear, as the neonatologists seem to shy away from saying such… Ever since Nadia’s brain bleed and lack of oxygen to her brain was discovered, I feel like so many doctors are scared to predict future behavior. And I realize no one truly knows, as the brain, especially a baby’s brain, is a magical thing capable of much healing, but still, hearing no major issues were found at this point was pretty huge for me.

 

I wish I could really remember everything that was discussed, but since most of it was a bit foreign to me, I just can’t. I do know the PT reviewed Nadia’s movements, making sure she was using both sides of her body equally, arms and legs, which she is. I knew this was the case through from several neurology exams, but still nice to hear again.

 

Nadia was not the biggest fan of the PT, but this wasn’t surprising, as Nadia seems to scream for most strangers lately. This is our homework for the next week…

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All this sounds simple though… We shall see! The therapist would like to see Nadia weekly for the next four weeks and then we’ll re-evaluate to see how many more visits, if any, are required.

 

Regressing?

I feel like Nora is regressing a bit lately… When it comes to eating… The past week she has eaten much less than what is even normal for her, which is little to begin with. And she’s been crying lately for a bottle. I hate she still takes bottles at two, but… In bottles she either gets Pediasure or toddler formula meant for two year-olds. The formula is probably better for her than any real food I can get her to eat, as she is limiting herself to popsicles, ‘fruit’ snacks, chicken nuggets, fish sticks, cheese, and the occasional frozen gogurt. The pediasure is pure sugar, so although it was recommended by the neonatologists who still follow her from Iowa City, I’m not a huge fan of it. And I know, plenty of moms with ‘normal’ kids will tell me she will eat when she’s hungry, but I’m beginning to think that isn’t the case. I’ve noticed often Nora is extremely moody, but if I give her Pediasure, she perks up and is happy, like perhaps she was just overhungry. Why wouldn’t she connect eating with feeling full?  Ugh…

My other thought is jealously… She sees Nadia getting a bottle and wants the same attention… I don’t know. I’m running out of ideas, but feeding Nora is seriously so stressful for me. I dread mealtimes. I don’t know what to offer her. She just stares at almost everything except her standard mac and cheese. How many meals in a row can a child eat the same thing??? She used to like apples, but even those she turns her nose up at lately. Most vegetables she spits out. She did eat quite a few pistachios at dinner tonight, which shocked me. Of all things for her to eat!

I know Nora isn’t gaining weight, as she steps on our scale every morning as she likes the beeps it makes… Nadia is so much easier to feed, as so far she likes lots of the baby food I’ve tried with her. I wasn’t originally going to do baby food with Nadia, thinking baby-led weaning would be easier. But I did the baby led shit with Nora and see how well that worked out! So Nadia is getting jars of stuff that sometimes smells awful, but she likes it!

Tomorrow afternoon is Nadia’s first physical therapy appointment. I have no idea what to expect, but I’m nervous. I guess I don’t want to find out she’s behind in meeting milestones for her age. But perhaps knowing sooner rather than later is better…

Nadia’s Cardiology Appointment

Do you ever feel like some appointments are complete wastes of time…?

Nadia had one episode of SVT in the NICU, which did require her heart being shocked with those paddle things, but… Over a year of medication three times a day seems excessive based on one episode, when she was a preemie, whose heart wasn’t ready to beat on its own outside the womb to begin with yet. But, I’m not a cardiologist, so… Our appointments seem a bit pointless though, as all they do is listen to her heart, adjust medication based on weight, and send us on our way. Three hours in the car round trip, for maybe an hour at the hospital.

Today they decided not to adjust her dose, but rather to leave it stable and thus begin to wean her off the medication. We can home with a portable heart monitor she will wear for the next 24 hours. We see the doctor again in three months, at which time another 24 hour monitor will be sent home with us. I think we repeat that every three months for the next year as her dose continues to be lowered. I am thankful we haven’t had more heart issues… But the drives to Iowa City, this being the third in the last seven days, are wearing me out. FullSizeRender 26Nadia was super happy after her EKG, in the photo above… but the drive home was another story. I think she is getting her two top front teeth. And they seem to be coming in pretty far apart. Is that an issue??

Nadia’s 9 month check-up

This morning was Nadia’s 9-month check-up with our regular pediatrician in town. No shots, thank you God! I did leave a bit discouraged though…

Last week we had Nadia’s neonatology high-risk check-up in Iowa City, basically a visit where they check milestones, fine and gross motor, social, physical, etc. It all looks like playing with her to me, but I know it’s a lot more than that! I left that appointment feeling great. There were a couple of areas where she wasn’t performing at 100%, but they evaluate based on an age range, that visit being 6-9 months. Her adjusted age as of today is 7 months 15 days, so they said she technically had several more weeks to meet all the milestones they were testing for before they would be concerned.

So today, our pediatrician was more concerned, specifically regarding:

  • Nadia makes no attempts to crawl, basically just lies on her belly and cries rather than attempting to push herself up on her hands or knees.
  • The only sounds Nadia makes are the traditional high-pitched squeals babies make. She does not make other babbling sounds, such as da, ba, etc.

Our pediatrician is referring us to physical and speech therapy. I don’t know the details yet, as those providers are supposed to contact me to set appointments. I don’t want to be that mom who’s in denial that there is a problem with their child. But I do think its a bit early to start therapy. But… what the heck do I know? Perhaps the sooner the better. Iowa City always tells me that preemies are known to be a bit delayed, even for their adjusted age. Isn’t it possible Nadia will catch up on her own, without therapy? Nora did everything early, so this is all new to me. And perhaps I’m just terrified to learn there really is an issue with Nadia’s brain… remember her brain bleed in the NICU, and the spot on her brain they found on the MRI that showed lack of oxygen at some point shortly before birth?

Last week Nadia did also see ophthalmology in Iowa City. Thankfully her optic nerves, retinas, and vision is perfect! We don’t need to return to them for 12 months!

40 Weeks

Oh if only I were writing about 40 weeks pregnant…

Nadia was 40 weeks, 30 weeks adjusted on Tuesday. So many smiles!! She’s still not sitting up on her own but I think she is getting close. She can definitely sit in supported seats like our high chair. I’ve tried baby food with her some, but most she pushes out with her tongue. Perhaps she just isn’t ready yet. I need to stop comparing her to a 40 week old full term baby. She probably isn’t even at the level of a 30 week full term baby, as most preemies are behind. Just hard for me not to compare. And of course… the issues with her brain are still in the back of my own mind… 

Today though, I’m focusing on this cute smile! All 16 pounds 4 ounces of smiles!