A comment was made recently comparing my attempt to keep an upbeat attitude to a children’s book character.  Pete the cat.  He faces a variety of circumstances that might get him down, but as the book says “Does Pete cry?  Goodness no!  He just keeps singing his song.”

We had our specialist checkup today.  The day got off to an early start, followed by a busy morning.  After some early morning cuddling, and a belated Teacher Appreciation gift delivery, I arrived back at the house for an 8:00 palliative care appointment.  She couldn’t believe how alert they were!  Both boys also had great weight gains this month.  If you recall, they both stalled, with Nolan in particular going nearly 3 months with no real weight gain.  I was relieved to confirm he had gained a full pound in the last month!

Landon: 17 lb 14 oz

Nolan: 13 lb 10 oz

We hit the road for our appointment soon after.  I took advantage of Papaw and Nana’s ever helpful hands and sat in the back to work on medical records.  I was behind on some phone calls and sorting.  It was loads of fun!

Just kidding…no one likes this stuff.

The appointment started with Occupational Therapy.  She examined both boys and assessed their tone, responsiveness, and strength.  There was a notable improvement over their assessment 3 months ago.  Landon was particularly alert.  Both boys displayed a response to sound, grasped when they should, and had improved head control.

At my pushing, we had a long conversation about trying the next steps in feeding.  I just happened to have some stage 1 food along… so she agreed to observe a “tasting”.  We didn’t use spoons, but instead capitalized on their strong suck reflex.  We dipped a finger in to the food, then let them suck at the tiny amount of food.  We are not yet ready to spoon feed, as their instinct to swallow to clear their mouth isn’t strong enough yet.  But they did…ok!  We can continue using a pacifier, finger, etc and allow them to taste food, practice emptying their mouth, and swallowing small amounts safely.  This is NOT adding to their caloric intake or replacing a bottle.  The amount is minimal.   It’s more about exposure and practice.  But I’m happy to give them the chance to try something new.  I learned a lot about positioning, tricks, and what to watch for.

 

 

Nothing too upbeat happened after that.  Nolan’s weight gain continues to be concerning.  He bought himself some time (sound familiar?) but if he keeps up this very slow trend, they will likely recommend a feeding tube soon.  I’ll be calling his weight in monthly.

I will call tomorrow to set up an appointment to have Nolan’s head measured.  We’ll need to determine if it is now asymmetric enough to merit a corrective helmet.

Another not so unexpected bombshell…the neurologist inquired about their upcoming vision appointment, and was concerned.  The boys wouldn’t even react to light today.  All signs pointing to their already severely limited vision…worsening.

 

“Does Pete cry? Goodness no! He just keeps singing his song.”

 

There is a ton more I could say, but this is far too wordy already.  So instead I’ll sum up our current prayer requests.

1) Nolan’s weight gain

2) Safe feeding

3) Vision potential

4) Joyful days

5) Memory making moments

 

Do I cry?  Sometimes yes.  But I’ll still keep singing my song.

 

 

 

I spend much of my day trying to be the mom many of you already think I am. In some ways that is exhausting. In other ways…it is energizing.

When I feel down, when I feel tired, when I feel discouraged…I sometimes give God an earful, but I also think of the many of you who are watching, waiting, eagerly seeking updates on the boys, praying fervently, and wishing you could lend a hand. I know if you were here, you would do more. So when I am done and depleted, I try to suck it up and dig a little deeper for you.   You are my inner voice. You are my second wind.  You are the wind beneath…well, you get the point.

So in my own awkwardly worded way…thanks for helping me be a better mom.

Thanks for “mom”ing right along with me. Thanks for helping me keep going. Thanks for keeping our names in God’s ear. I’ve needed you more than I expected, and you’ve delivered more than you know.

Happy mother’s day!

This is the “mama” take on all things development for the boys as of 6 months old (adjusted age). Unless I differentiate, I am referring to both boys. You can see the 3 month assessment here.

This is primarily for my records, so if it seems like I’m talking to myself, or filing away ideas for parents going through the same things…I might be. Feel free to scroll for the photos only.

 

Vision:

My concern in this area has grown. I haven’t seen the improvement here I had hoped for. And it seems they are focusing and tracking less frequent than they were. They are still attracted to light. I can’t help but wonder how much their vision issues could further complicate their development. So many things are initiated by learning through observation. (reaching for an object, mimicking speech and mouth movements, even eating!) They will get a new vision assessment in June. I hope they see enough potential to bother attempting to improve their vision through corrective glasses/goggles.

Therapy:  I still try to encourage them to track sometimes. I think my approach in this area has switched for now though. I am temporarily assuming they can see nothing, and try to help them get to know their environment with that in mind. When I place them near toys, I move their arms and hands to help them realize what is nearby, and what sound it makes. If I pick them up I try to put their face next to mine, even if only briefly. A familiar touch or smell combined with my voice may be the only way they know mama is here.   Speaking of mama, I’ve started using the sign for mama as well. Now…if they can’t see you might wonder why I would bother signing. But I’m actually signing it on THEM. Essentially, I say “mama” and tap their chin twice. That’s my version of this:

Part of my thought is that could be another way for them to identify me, or potentially down the road ask for me.

 

Speech:

That was a bit of a segue in to speech. The boys make throaty sounds on a more regular basis!!  It is still not a coo. But as mentioned above, they are not yet learning how to shape their mouth or move their tongue by watching us. They may also be slightly tongue tied. It seems mild, and they obviously eat better than anyone anticipated already. And their speech delays are normal as many Liss babies are non-verbal. So I’m not sure if they will recommend action on that or not. But I will bring it up at the next specialist appointment.

Therapy: I still try to talk to them, and make basic sounds during cuddle time.   I also massage their cheeks, shape their mouth while I’m talking and cooing, and brush their gums for stimulation.

Also in the category of speech…they clearly respond to each other. If they are in the same room together and one cries out, the other will cry out too. So while that can be overwhelming at times when you’re trying to get everyone calm, it is awesome that they seem to respond to each other.  🙂

 

Hearing:

Their hearing seems to have improved. Or at least their reactions are more notable.   If they are in a nice alert state, they will turn toward voices, and wrinkle their faces at sounds they do not like. It seems like they smile in response to voices now sometimes!!

Therapy: I use sounds to get them to turn their heads from side to side. I often use wrist toys on their hands so that when they move their arms, they create a jingle.

 

Fine motor:

We’ve seen small improvements here! They grasp far better than they did. Fingers, hair (ouch) neck skin (double ouch), and toys! Both boys have also managed to bat at toys (after being made aware of them through the methods mentioned in the “vision” section) and have successfully grabbed on to items.

Nolan gets his hands together at midline on a regular basis. Both boys get their hands to their mouth more often.   If you put a toy in Landon’s hand, he will  often try to get it to his mouth.

Therapy: I put different toys and textures in their hands. I brush their hands for sensory purposes, but also work on opening and extending their fingers. If they are on their boppy pillows, I make sure there are toys either in their lap, or hanging above them so that their hands will stumble upon something to hold.

 

Gross Motor:

I see improvement, albeit slight, in head control. A little bit in tummy time, but more so in lifting their head while in an assisted sit. Their head still drops, but they can pull it up and hold for a few seconds at a time. Both boys seem to enjoy “sitting”.

Therapy: Tummy time, modified tummy time on our chests, sit ups, stand ups, bicycling legs, infant massage, practice head control, assisted rolling, stretching, and balancing.

 

Formal Therapy:

We now have outpatient PT weekly, and Early Intervention at home or day care weekly. Some of the homework therapy we have from that includes neck stretches, brushing, joint compression, rolling, and various positional ideas (tummy time, side play, assisted sitting, etc). I love the (borrowed) Tadpole Positioner as an extra set of hands.

 

We are also so thankful for an engaged and willing day care. The team is receptive to ideas from me or the therapists, they even come up with their own ideas, and help check some of our daily boxes, like tummy time and neck stretches. And of course cuddle time.

 

Medical notes:

L is on Keppra as well as Trileptol. We have seen a very noticeable improvement in his alert time by coming off of Phenobarb.   He has had 4 clinical focal seizures since the 3 month update. Each one has been his right arm with a methodical pump.

 

N is on Trileptol. He is much happier on this one. If you recall, we tried weaning him off meds completely since he had actually never had a clinical seizure. No luck. Seizures surfaced. Nonetheless, this med seems a better fit for him in terms of comfort. He had a bit of an episode in February that resulted in a trip to the ER, (which was why he went on Trileptol). And the last couple of days he has had a few spastic movements that we are watching. They are somewhat random and infrequent. I have them on video and am in communication with our local pediatrician and have a call in to our specialist to discuss.

 

General notes:

My favorite note this update is an improvement in their general demeanor. They seem genuinely happy. They enjoy being around the sounds and chaos of our daily life. I love seeing them smile, grab on to things, and respond positively to touch or to voices.   It has also been fantastic to watch Landon become more alert, and see both little personalities come to life.

While it could be discouraging to stop and think about the fact that I’m celebrating grasps and smiles at 6 months…I am instead grateful to be celebrating months at all. I feel so fortunate to talk about any milestone, no matter how small, rather than feeding tubes or other new equipment.

Their progress is slow. Very slow. But it is real. And we are moving forward. One teeny tiny baby step at a time.

 

Did you survive that novel?  You deserve some photos!

Did I mention more smiles?

We have also tried sitting in the high chair for their gum brushing, and even using a spoon a tiny bit.

 

 

Working on grasping, sitting, and reaching.