June Medical Update

Cardiology: On June 6th we saw Dr. Forsha instead of Dr. Shah, just a one time substitute.  All of Lydia's repairs look good and are functioning well.  She still has and always will have a murmur on her Left Ventricular Outflow Tract.  Her repairs are a little oversize so that as she grows and her heart grows, she grows into the repairs.  Her heart muscle is still a little big from how hard it was overworked for the first 9 months of her life.  This will not necessarily go down in size, rather it won't continue to grow and her heart will catch up to it.  In the next couple years, we will consider a CT/MRI to better visualize her IAA repair.  When she is older we will discuss sports restrictions, but for now she has none.  Lydia is cleared for typical anesthesia, nothing fancy due to her heart but cardiac anesthesia is still contacted when Lydia is in the operating room.  She is also cleared to see the dentist without any pre-meds.  #love4lydia #chdwarrior

Endocrine: On June 6th we saw Dr. Feldt's nurse practitioner Terri Luetjen.  She was very happy with Lydia's growth, now that she is back on the growth chart.  Weight is at the 10th percentile. Height today is at the 1.7 percentile. She has grown 6.3 cm over the past year.  Lydia will continue to have her calcium, thyroid and IGF-1 checked annually.  All are in the normal range but we will continue to monitor growth due to the increase chance that Lydia will be small in stature due to the 22q11 deletion.  #22q11 #growinglikeashortweed

Immunology:  On June 6th we saw Dr. Raje's nurse practitioner Brenda Snyder and we all happy danced that Lydia can now receive her live vaccines!  Lydia has had no illnesses other than upper respiratory infections and not hospitalizations because of them, so in Immunology's eyes she is super. #happydance #vaccines  #mmrshots

Gastroenterology: Dr. Cocjin was at a conference.  Sad.  I enjoy visiting with him.  Next time! #tubie #tummytalk #poop

Ear, Nose, Throat: Dr. Arganbright was on her honeymoon in Italy.  Yay for her!  We'll see her next on July 24th for Lydia's Tonsillectomy.  #favoritedoctor

Speech Therapy: We saw Anne at Children's Therapy Services on June 7 for our weekly visit.  Lydia is doing so well with her speech and is a sound machine.  Talking, singing, counting, spelling.  It's so much fun and I just love listening to her, especially when she's avoiding bedtime.  We are listening for glottal stops and airy or nasal sounds through her nose.  We can better assess post-tonsils.  #cts #anneisawesome #opah #nonono

Tiny Tots Gym: Lydia was finally able to go to Blue Valley Rec for Tiny Tots gym.  The measles scare kept us away for a few months.  She loves going to gym and gets so excited.  She tumbles and climbs, jumps and spins.  Her favorite thing is the trampoline and she will beeline for it when you're not looking and when she's not supposed to be on it!  #tinytots #gymnastics #jumping

Summer Reading: We took the day off as an opportunity to go to the Central Library and pick up Lydia's Summer Reading log and get her free book.  She picked out Pete the Cat!  We played a bit in the 6 by 6 Ready to Read activity area and said hi to all our librarian friends.  #jocolibrary #6by6 #books  #summerreading

Infant Toddler Services:  Carrie & Dana came for their last in home visit on June 12th.  I'm really going to miss seeing them every month.  They weren't just there for Lydia, they were there for me and became friends.  Luckily, we'll continue seeing Dana every couple of months for Lydia's nutrition, just privately and not through ITS anymore.  #itsjc #helpedhercrawl  #helpedherwalk #signlanguage

TA Waiver: Kipp came for an in home assessment of Lydia and whether or not she continues to qualify for the technology assistance waiver.  Due to her g-tube and ankle-foot orthosis she does still qualify.  This means that when Lydia start pre-school 2 days a week we'll still have our nurse, Stacey, 2 days a week and grandma keeps her on Thursdays.  Just days after Kipp's visit I found out that the State of KS did not contract with Amerigroup for Kancare next year and we will have to switch secondary insurance providers for Lydia.  #hassle #willmisswanda #amerigroup

Home Vent:  Lydia delivered tons of toys to the Home Vent clinic for graduation gifts for when little kids get their trachs out.  Thank you again for all the donations!  They were so thankful and happy to see how well Lydia is doing.  We saw Kelly, Sarah, Addie, Dr. Winston and Dr. Lachica.  #happyhearts #memories #nomoretrach

Neurological & Behavioral Development: Lydia spent about 3 hours with Dr. Willen and assistant on June 21st.  This is a nerve racking appointment because Lydia "plays" while she is being assessed and rated on skills that are not telling by watching.  Every time I think she is succeeding and Dr. Willen is scribbling I think "oh what could be wrong?" or "should she know how to do that?"  Lydia is followed by Dr. Willen due to her heard defect and will be seen by her annually.  Overall, Lydia is at or above average on all things tested.  The two main concerns and things we will watch as she starts pre-school and advances are low muscle tone and constant movement.  The low muscle tone is common for 22q11 kiddos and the constant movement is common for CHD kiddos.  Lydia may not have the option of competitive sports because of the her heart and the low muscle tone.  She may be clumsier than other kids and notice a difference on the playground or in gym.  For now we'll keep her in gymnastics and swimming, maybe some soccer this fall.  I am actively working on accepting this and celebrating all the other amazing things she will do.  The tears are coming now, so let's move on.  The constant movement may or may not develop into a diagnosis.  It could just be that Lydia will need options in the classroom like balls to sit on or kick bands.  These things are very commonplace in schools these days, so that's nice to know.  #smartypants #clumsy #sharpasatack  

Run for Little Hearts:  Originally we were not supposed to attend Run for Little Hearts this year but we signed up to get our awesome t-shirts anyway.  Turns out our plans changed so I was able to go with my mom and Lydia to walk the 5k.  We saw a lot of our heart family friends and had a really good hot time.  #5k  #norunningthisyear #oz #chdbabies #love4lydia

Plastic Surgery Clinic: On June 28th we showed up for what was supposed to be a quick 30 minute check in with Dr. Goldstein and it turned out we were scheduled for a full clinic visit. Oops.  After I questioningly greeted every specialist that walked into the room, one finally listened when I told her we aren't seen in this clinic and were just here for the doctor.  In true Dr. Goldstein fashion, he was taking his sweet time and didn't get around to us before we had to leave.  His physician's assistant saw us and let us go on our merry way to the next appointment.  Guess what?  All this and no one even looked in her mouth at her palate repair!  #wtf  #ugh

Dentist: Dr. Parks was our next visit on June 28th.  Best office in town.  There is a climbing gym, video game station and a boat in his waiting room!  When you go back to the "office" for your visit you get to play with tons of toys and tablets, plus you get to brush a shark's teeth!  The hygienists and Dr. Parks are unbelievable at what they do.  Lydia did fantastic, letting them brush and count her teeth and even polish and and treat them with fluoride. She got to wear the pineapple glasses and sit with Spider man while she saw the dentist.  #brusho #teeth #openwide

3 Year Old Check Up: Dr. Davis completed our very long day on June 28th.  I don't remember how I found her but I'm so glad I did.  She's seen it all and is very connected to CMH.  I bring my list of updates and she brings her list of reports from the doctor visits Lydia has already seen throughout the month.  She is so familiar with her chart and that makes me very happy.  We are working on getting Lydia off some of her meds, most of which are maintenance type meds for her gut motility.  #byebyemeds #onthegrowthchart 

Optometrist: Lydia's 4th eye doctor appointment and her 2nd with Dr. Kennard was on July 3rd.  Lydia and Dr. Kennard have pigs in common so they get a long great.  Lydia brings her pig and Dr. Kennard has pigs on the wall, pigs that move, and a pig light she wears around her neck.  Needless to say they hit it off.  Lydia's eyes are stable so we don't have to return until she is five! #dilated #shades #piggiesforlife

Valley View:  Lydia and I visited her preschool on July 3rd so that we could educate the staff on her g tube and eating routine.  She was immediately curious and started playing, excited by the playgrounds and exploring the hallways.  I think she's going to have a great time! #zebraclassroom #preschool #3yearolds

Pre-Admissions Testing: We wrapped up our appointment extravaganza at CMH downtown yesterday afternoon.  Lydia is ready to go and in good shape for her combo surgery on July 24th.  She will have an approximately 2.5 hour procedure, close to 4 hours with the pre and post op.  Dr. Arganbright will remove Lydia's tonsils and upper adenoids, check and potentially replace her ear tubes, and revise her tracheostomy stoma that never fully closed after decannulation.  Another general surgeon will remove the granulation tissue around her gtube, essentially removing one small ridge of extra tissue growth that will allow her button to lay flat against her tummy again.  #pat #g2g #takemytonsils

Whew.  Later.