Liam’s growth

New Found Freedom!

Liam was born with a left clubfoot. The doctors told us that it can be genetic. This is on my side of the family, but when they found it in my 18 week ultrasound I was still surprised because it hadn’t even crossed my mind. I was also sad because my younger sister was born with bilateral clubfeet and I have vivid memories of being in the doctor’s office watching him manipulate my sister’s feet while she screamed! Her feet are corrected now, but I will never forget the many casts she went through as a little girl.

After we found out about Liam’s foot we began doing research on how doctors repair clubfeet now a days. My dad came across a method called the Ponseti Method. We began praying that Liam’s foot would be easy to fix and not require surgery, and that we would find a doctor that would apply the Ponseti Method. And of course the orthopedic doctor we were referred to applies the Ponseti Method on all his patients who have clubfeet, praise the Lord! Basically Dr. Ponseti’s method requires a series of casts, usually 6-8 weeks. Liam only needed a cast for 5 weeks! Then, if necessary, the doctor will perform a surgery to clip the heel cord allowing the foot to flex. Our doctor said that Liam is in the top 10% of kids who do NOT need the heel cord clipped! Which is so awesome because then it would have required him to be in casts for 3 more weeks – not fun for anyone! After the casts, the foot is corrected but still needs to be held into place. So Dr. Ponseti recommends they wear a brace for 3-5 months for 23 hours/day. Liam is now DONE with the 3 months of wearing the brace full-time! Now he is required to wear the brace only during the night and one long nap during the day until he is 4 years old. So he is now free to move and kick and play when he is awake without his big clunky brace to weigh him down! I’m so happy for him! Probably much more happy than he is, because he doesn’t seem to mind his brace too much anyway;). Although he has been smiling much more lately!

I’ve attached the before, during, and after pictures here so you can see the difference! God is so good and his feet look perfect!

Clubbed footFor some reason I love the crying pictures. He was probably tired but I had to get the picture first;).

CastHe is 6 weeks old here, but he got his first cast put on at 4 weeks.

skaterboyWhen he was 2 months old we had the brace put on.

FeetAt 5 months old he was given his freedom during the day!! Sara Harper took this one and I just love it…

Picture 5She took this one too… too cute!!


My Little Rock Star…

will be 5 months old tomorrow (Monday)!!! That is SO hard for me to believe. I feel like he was born yesterday… ok maybe not yesterday. I feel a little better than that;). Here are some cute pictures I took of him this week. This first outfit was given to us by Jeremy’s grandparents and it’s just adorable! I don’t want him to grow out of it!

We have just started to put him in the jolly jumper and he seems to like that. He likes to plant his left foot on the ground and pivot and jump around with his right foot. It’s pretty cute, but something I need to let the physical therapist know about. We just got the other outfit in the mail this week and I love it! He doesn’t seem to mind the hat at all yet, which I’m so glad about;)! You’ll notice he loves to suck on his hands. But when we get about 6 inches from his face, his hands go in our mouth… cute! Enjoy!

onesie

jollyjumperhomeboy


Speech and Communication Points

Last week Jeremy and I attended the Down Syndrome Association of Middle TN conference called “Fired Up”. We sat in on 2 seminars; Speech and Communication from Birth to Two, and one on Medical Updates. Here are some points I learned in the speech class:

  • Speech therapy can start as early as 8 months of age.
  • Start to teach baby sign language when the child can wave bye-bye.
  • First 2 signs to teach them are ‘more’ and ‘finished’, to give them a sense of empowerment.
  • Bring awareness to an object and make it pop out of the environment – more colorful, funnier, louder etc.
  • Use a swivel chair to work on sound localization. This helps them learn to hear something and know where it comes from.
  • Keep them attending to an object longer, and talk about the object.
  • Use bubbles for visual tracking. Help them learn to pop the bubbles.
  • Teach cause and effect by helping them switch the lights on and off.
  • You cannot do too much work on oral motor skills.
  • Begin using a pacing board (definition below) while they are in the one word stage.
  • DS children generally start speaking between 3 & 4 years of age.

I’ll post about what I learned in the Medical Updates seminar later… I’m tired and ready to get some much needed sleep!

A pacing board consists of a series of dots (either black dots or color coded dots related to intial, medial, and final sounds) placed across a cardboard sheet. Depending upon the age and need of the child, there may be as few as three or as many as 10 dots placed across the board. The professional uses the board to help the child identify and produce initial and final sounds of simple words, syllables from bi-syllable and trisyllable words, and later the production of different words from simple and complex sentences. For example, the child is taught to touch a dot each time he or she says a syllable in a multisyllabic word. The advantage of the pacing board is that it provides both a visual and a tactile cue. It also provides the child with structure and the necessary pacing for proper articulatory movements of sounds, syllables, and words in sentences.



Update on Liam

Liam is now 4 and a half months old – time is flying by! The other day I was talking to my sister about something Liam had done “when he was a baby”. I stopped myself and thought… he’s only 4 months old! He’s still my little baby, but he’s growing so fast!

At his 4-month check-up he weighed 15 lbs, 6 oz., and was 25 inches long. His head circumference was 15.79 inches around (to be exact). The growth chart we received from the doctor is based on normal babies. I’ve compared it to the growth chart I have for babies with Down syndrome, and here’s where he’s at: on the regular chart he falls in the 55th percentile for weight and 50th for height (for his age). On the Down syndrome growth chart he is in the 90th percentile for weight and 85th percentile for height. So I was encouraged by that. I don’t have a Down syndrome chart for head circumference… he’s in the 7th percentile on the regular chart. But babies with Down syndrome tend to have smaller heads so that’s to be expected. In the end, the numbers are telling us he is a healthy growing boy – praise the Lord!!

He is such a good baby too!! He is very easy going and lovable and is sleeping 11 hours at night consistently now… what a gift! He doesn’t enjoy being put to sleep but once he gets there he’s out! We had a physical therapy evaluation done on him because he has hypotonia (low muscle tone). His neck was really weak for a while but it’s getting stronger every day and he can now hold his head up unassisted for 5 mins. in his Bumbo! I am so excited about this… there is so much more Liam can do now that his head is getting stronger. The physical therapist is going to start coming to the house once a week for an hour to help me work with Liam to help get him stronger. He has his daddy’s chest and shoulders so I think he will excel:)!! We also have an Early Intervention teacher coming to the house twice a month to make sure he is up to date with his development.

Here are some other recent developmental milestones Liam has reached:

  • talks using “aah” and “ee” vowels
  • grabs his foot when his brace is on
  • grasps a toy actively and brings it to his mouth to suck on it
  • responds to me by talking when I talk/sing to him
  • quiets when I sing or a song is played
  • rolls from back to front and front to back with his brace on (still not consistent)
  • smiles in response to ‘peek-a-boo’
  • bares his weight on his feet for a few seconds when I hold him
  • loves sucking on his hands

liambumbo

Liam in his Bumbo… he looks like he’s really trying!!

liammaya

Liam and his cousin Maya! Don’t you love her hair!? Also, notice Liam’s nice broad chest and shoulders… and he’s a definite outie;)!