Monday, April 1, 2019

James' Cleft Lip Surgery



James came into our home days after his first birthday. He was scheduled to have his cleft lip surgery 3 weeks later. The doctors would also be performing surgery on his nose (rhinoplasty) to help make it more even, as babies with cleft lips have flattened nares on the the side of the cleft. And they would be inserting ear tubes to help prevent the multiple ear infections that cleft babies are susceptible to. We didn't have any experience with having a baby with a cleft lip (& palate) so we learned as we went. We asked many questions! Some questions we asked, the doctors couldn't answer.



One thing is certain, we quickly came to love that toothy grin James would flash us. Since James also was experiencing developmental delays, we had weekly physical therapy, occupational therapy, feeding therapy, and other early intervention services. Even though he was 12 months old, we were still working on him sitting up independently.


                               


We discovered a special bottle, called the Haberman feeder, that is a must for cleft babies. The nipple is elongated and has a special one-way valve to regulate the amount of formula/breastmilk released. We also used PediaSure for extra calories and added infant cereal to thicken it. James quickly went to pureed baby food, but he had quite a bit of nasal regurgitation. Since he was already a year old, we also let him finger feed very soft foods, like Cheerios.
The surgery is mostly a blur in my memory. I was really anxious and didn't know what to expect. This was our first rodeo, as far as surgery with a foster child. (As a foster parent, you cannot give consent for surgery so there needs to be a court order, which is a process in itself.) Prior to his surgery, I remember the surgeons telling us the cleft lip surgery tends to be harder on the parents than the palate surgery because the sutures are all external. 

On the day of surgery, we had to arrive at the hospital very early in the morning. James was a little grumpy because he couldn't eat anything. The surgery was relatively short (in comparison to some of his later palate surgeries). I remember James having difficulty waking up from anesthesia and fighting it. He had to stay in the hospital overnight to make sure his breathing was fine. I stayed at the hospital with him while Daniel took care of everyone else at home. I remember meeting several of the nurses who cared for him while he was in the hospital after he had been placed in CPS custody. They couldn't believe how great he looked and how much weight he had gained.  

This picture shows James with all his sutures and wearing "no-no's" to prevent him from grabbing at the sutures. He was still happy overall.


This next picture is immediately following the suture removal. James is still smiling.


And then as the incision starts to heal.



We would have to wait about 6 months for the first surgery to repair his palate. Mind you, all of James' surgeries were performed behind schedule.

Tuesday, November 6, 2018

Our Adoption Journey: Meet Johnathan

                                           


Alex and James came to us on April 29th. At our first visitation for Alex & James we discovered their biological mom was pregnant and due in 2 weeks, but by the next visitation she had already had the baby. Johnathan was born on May 5th, 2005. He was placed in another foster home straight from the hospital. Daniel and I had some discussion on what we would do if we were asked to have Johnathan join his brothers. Ultimately we decided that if the county allowed us to have both James & Johnathan in our room (in cribs) that we were willing to take him. After all, our family grew from 2 to 4 children overnight. What's 1 more?


Our room with 2 cribs.

Once it was decided that Johnathan would move to our home, things moved rather quickly. James was already scheduled for his cleft lip repair so we all decided it would be best to wait until after that was done.  Johnathan was 5 weeks old when he joined our family.

He had already been diagnosed with allergic colitis due to a milk allergy and was on prescription formula. We were able to have this formula shipped directly to our house. He continued to have difficulty with vomiting and diarrhea, as well as being very fussy. 

Johnathan-3 months, James-15 months

In many aspects, having James and Johnathan was a lot like having twins. Even though they were 12 months apart in age, James was behind in development and growth. James had multiple in-home early intervention therapies: occupational therapy, physical therapy, developmental therapy, feeding therapy, and eventually speech therapy too. Johnathan was able to benefit from these services as well.


Johnathan-1 year, James-2 years

The boys had weekly visitation with their biological parents until the end of the year. The family court case continued, with the plan eventually going from reunification to adoption. We were identified as prospective adoptive parents since we had filed for defacto parents early-on. Alex & James were on a different timeline than Johnathan, since he came into care after they did. The boys also have Indian heritage so that required extra steps (tribe notification of court dates, possibility of tribe taking jurisdiction or placing the children with an Indian heritage family). 
And we began looking for a BIGGER house!

Monday, October 15, 2018

Sensory Processing Disorder


Since I have several posts about the various areas involved in Sensory Processing Disorder, I decided to make a "home" page where you can find all of the links to the posts. Have fun searching!







Wednesday, October 10, 2018

Our Adoption Journey: Meet Alex & James




The county social worker had described the boys as: Alex is a very quiet 2 year old with curly red hair and big blue eyes and James is 12 months old and was born with a cleft lip and palate. 

We arrived at the other agency and waited until the other foster mom came in with Alex and James.  Alex was really quiet and just walked around the room, trying to avoid making eye contact with anyone.  The foster mom handed James to my husband and there was an instant bond.  She spoke mainly Spanish and since Daniel was also fluent in Spanish she gave him the instructions.  James ate from a special bottle and could only eat pureed foods.  She also gave us the file that she had on the boys with the upcoming medical appointments and any information she had collected.  

I ended up driving home because the moment Daniel met the boys, it became "real" to him and he was overloaded with emotions. During the car ride home, the only word Alex said was "car" as he was pointing to the other cars passing by. James was completely silent and I kept checking on him because I had never been around a baby (or 1 year old) who didn't make any sounds. 

We came home and met with our social worker in the afternoon to go over the paperwork and the folders, which was all new to us.  We had to log whatever items came with the boys (mostly clothing), but I remember it wasn't much. We would have to schedule the boys for physicals within 30 days and have the physician fill out the necessary paperwork. We were given the information on visitation, which was ordered for 2 hours a week.  The social worker would contact us to schedule it once he was in contact with the biological parents. 

Since it was our son's (DJ) 13th birthday we enjoyed a small family celebration that evening.  DJ commented, “They’re not leaving us.  We’re going to keep them forever.”  I reminded him that although we were hoping for that, nothing is certain with foster care and we needed to keep an open mind.  Boy was he insightful! Looking back, I remember it being a very emotionally draining day.  I can only imagine what it must have been like for the boys.  

Within the first few days, the boys started bonding with us.  Alex became more comfortable, and even began calling us “mommy” and “daddy”, probably because he heard our older children call us that.  We were getting accustomed to James’ feeding and sleeping schedule, which reminded me more of a 6 month old than a 12 month old.  James began physical therapy and the therapist gave us exercises to start at home.  We also had an appointment with UC Davis’ Cleft Palate Panel and James was scheduled for his first surgery to repair his lip and insert tubes in his ears.  We were given information on several resources as well.

We went to the first visitation and, to my surprise, found out that their biological mom was pregnant and due within 2 weeks.  However, by the second visitation a week later, she had delivered another boy, Johnathan, who had also been placed in foster care.  My husband and I had several discussions regarding whether or not we could take Johnathan if one of the social workers asked.  The only way it would work for us was if we could have the 2 babies in our room.  We decided that if we were allowed to have them both in our room, that we would agree to take him.  No one contacted us so I decided to bring up the question with our social worker.  It took several weeks, but it was agreed that we could have Johnathan join his brothers in our home (after James' cleft lip surgery).  By that time, he was 5 weeks old.  Overall, he was healthy, although we were told that he had allergic colitis due to lactose intolerance.  


 

Saturday, August 25, 2018

Preauricular (Ear) Pit



If you're anything like me, you read the title and thought, "What is an ear pit?".  I had never heard of it either, until Amada. When we went to the hospital to pick her up, I noticed a small hole next to where the ear attaches to the face. It almosts looks like a piercing. I asked the nurse about it and she explained it was an "ear pit".  I did some research, then asked the Pediatrician at her 2 week check up. I was reassured that most of the time they don't cause any problems.


Sorry this picture is a little blurry, but if you look closely you can see the pinpoint hole.  Amada did have some issues with ear infections, and eventually had to have tubes inserted around 2 years old,  but that was unrelated to the ear pit.

Around that same time, we also discovered that she had an abnormality with her bladder/kidney, called vesicoureteral reflux. Basically what happens is when the person urinates, urine flows back up the ureter to the kidney. This can cause frequent bladder/kidney infections. Amada was prescribed a low dose of antibiotics to be taken daily. She eventually went on to have surgery in 2013 to repair this defect.

A couple of years after this, we began noticing pus leaking from her ear pit. It was only a very small amount so we continued to monitor it. This continued on an almost daily basis. We made an appointment with her ENT doctor. She recommended surgery to excise the sinus tract of the ear pit that is under the skin. This would close the hole and prevent further infection. We proceeded with the surgery, but had some issues with infection afterwards. She had to be on a couple different types of antibiotics but her incision ended up healing.

Incision site as it was healing (2016).

Fast forward to July 2018, more than 2 years after this surgery. One day Amada wakes up complaining of ear pain, except it's not inside the ear canal. It is at the site where her ear pit had been removed. I was shocked! I didn't think we would ever have to worry about an infection coming back to that site. I immediately took her in to urgent care where they confirmed it was an abscess. They recommended making a small incision to allow the infection to drain out. Amada was not about to let that happen. I asked if we could start antibiotics and let me try to get a hold of ENT. In the mean time, we were also giving her Motrin for the pain and doing warm compresses.


In the middle of the night she was unable to sleep because the pain was worsening so we took her to the Emergency Room. Once again they recommended opening it up to let it drain. Amada kept saying she wanted to be asleep for the procedure. The ER doctor recommended intranasal Versed to sedate her. Unfortunately she didn't like the idea of that either. It took 4 of us holding her to get the medication in her. She was able to rest for a while. When the ER doctor came back in she decided to do a needle aspiration instead. Even with the pre-medication in her, Amada became extremely combative.  Again it took 4 of us holding her in order for the doctor to perform the needle aspiration. We didn't want her or anyone else to get hurt, but she was NOT going to hold still at all. She ended up pulling away from the needle, but the doctor was able to extract some pus which she was able to send for a culture. 

After the needle aspiration.
For the next 24 hours she had some reprieve from the pain. Then it seemed the infection was spreading, as the pain was radiating down into her jaw. Thankfully I was able to get her an appointment with ENT. Again they recommended making an incision to drain it. Amada was NOT going to let them touch her in the office. They were able to add her on to the surgery schedule for the next morning however. 

Amada cuddling Marty, the therapy dog, at the Surgery Center

Her ear was healing up nicely after the procedure until she finished her antibiotics. The swelling and pain returned. The ENT gave her a refill of antibiotics so she could remain on them through the weekend. She had another follow up appointment on Tuesday and found out the infection remained and she would need to have surgery again the following day. Wednesday was supposed to have been her first day of school. Not just her first day of school, but her first day of public school.

This surgery did not go as smoothly as the last one. There was no therapy dog available and Amada's anxiety was over the top. The anesthesiologist ended up having to give her an injection of Ketamine and Versed to get her back to the operating room. The actual surgery itself went well. The doctor reported there was still quite a bit of infection present and some scar tissue from the original surgery. She gave Amada a different antibiotic again. The recovery from this surgery took much longer due to the extra medication that had to be given prior to surgery.

Amada was to follow up with her doctor in 2 days to change her bandage, but the doctor was concerned with the amount of anxiety Amada was having. We were able to consult with her Pediatrician who gave us a prescription of Ativan for Amada to take before her appointment. Even still, she was a fighter.

We continued to go to the doctor daily for wound packing and dressing change for 10 days. We even had to learn to pack her wound with gauze at home. Amada definitely tolerated it better as time went on. Of course rewarding her for cooperating (aka bribery) helped also!



The wound is finally closed. The doctor has ordered an MRI to check for any cyst remnants. We are hoping that Amada will not need any future surgery on this, but if she does, we will manage.

You can also watch the video I created Amada's Journey: Preauricular Ear Pit on our YouTube channel.

Sunday, July 15, 2018

Our Homeschooling Journey





As most of you know, we have been homeschooling for the past 16 years, in some form or another.  We began our homeschooling journey when our oldest children, DJ and Adriana, were entering 5th and 3rd grade respectively. We chose to homeschool through a local charter school and it was a good fit for us. In 8th grade, Adriana decided she wanted to go to public school and we agreed. Our neighborhood was opening a brand new high school the following school year and our schedule was getting increasingly busier with the addition of our three boys. Adriana attended public high school and went on to graduate from there, while DJ graduated from the charter school. Both were the right fit for each of them.


DJ graduation 2010
Adriana graduation 2012


Since our younger boys all had special needs and required a lot of therapy, they were all enrolled in public school for preschool and their early elementary years. We went on to adopt again in 2008, this time a baby girl. In 2010-2011, we were having a lot of IEP meetings with the school district to communicate the needs of our boys. There just seemed to be a lack of understanding from the administrators and the particular teachers that year, as well as denial that any of what we were saying as parents could be true. The boys would come home from school so overstimulated that we would end up dealing with behaviors until bedtime. For one of our boys, we were finally able to get more supports by the end of the school year, but we were told those supports would be scaled back the following school year. We had enough and decided to homeschool the boys the following school year. We felt that it was important to let the boys finish out the current school year, as they only had a couple of weeks left.

In the Fall of 2011, we began a new journey of homeschooling. We decided to homeschool our boys independent of a charter school and filed an affidavit with the Board of Education. In our state (California) we were required to keep attendance. Of course I kept all of their school work too in case there was any question of if we were really “doing school”. We began by exploring themes and creating projects as we were learning. Lots of hands-on fun! You can check out our posts on the ladybug life cycle, the solar system, ocean diorama, fun with flubber, ocean diorama, killer whale costumes, and much more! We also did a lot of practicing our social skills, from learning how to order meals at a restaurant to exploring local museums. We concentrated on toileting skills as none of the boys were toilet trained yet. Yes, even in grades 1st, 2nd and 4th. We also found a great program called Autism Center for Excellence (ACE) for children who are on the autism spectrum. It was at Sacramento State University which was only 30 minutes away from our house and Alex began attending 3 days a week. Since James still had an open cleft palate despite 3 surgical repairs, he required intensive speech therapy. We had him attend the Maryjane Rees Language, Speech and Hearing Center at Sacramento State University for a semester. Unfortunately he was also diagnosed with selective mutism and anxiety, so he would not speak outside our home or to unfamiliar people. It's incredibly difficult to do speech therapy with a student who refuses to speak!

Early days of homeschooling.

During that first year of homeschooling independently, we happened to move. Since our boys still required additional therapy, we sought help from the new school district. We went through the IEP process and were granted services under an ISP (Individual Service Plan), since we elected not to enroll the boys in school. We found this to be very helpful and I accompanied the boys to speech and OT at the local elementary school. That only lasted a year as we moved again.

Then came the educational experience of a lifetime...a cross country trip during the summer of 2013. We were on the road for 2 months and were able to visit locations such as Yellowstone, Mount Rushmore, the arch in St. Louis, Niagara Falls, Statue of LibertyWashington D.C., Myrtle Beach, Disney World in Florida, the Riverwalk and Alamo in San Antonio, TX, and the Grand Canyon. During the school year prior to this trip, we studied US History so the kids would have some background information. We even took part in a postcard swap where we sent 49 post cards from our state (California) and received post cards from a family who had been assigned to each of the other 49 states. As each post card was received we colored in the state it was from on a map of the United States. The kids looked forward to checking the mail everyday for a new postcard.



We continued homeschooling for the next 2 years as our family expanded again. This time with a girl and a boy! Social worker visits, doctor appointments, family visitation, and more therapy for the youngest 2 did not leave much room for homeschooling.
Rissa working with PT.

Then Joey received a diagnosis of autism and ABA (Applied Behavioral Therapy) sessions were added multiple times a week, in addition to speech, OT and feeding therapy.

Joey working with ABA therapist.


James began receiving services for speech and OT through our local school district (different school district). Alex and James attended a social group once a week (separately). Before Rissa turned 3 we had several meetings with our school district about her transitioning to preschool and we decided to also enroll the boys in public school. We worked with our new school district to assess all three boys and conduct IEP meetings. Alex was now in high school, James in junior high and John was in his last year of elementary school.


     


We decided to continue homeschooling Amada due to her anxiety, but with the support of a charter school. We soon found out that the grade level curriculum, especially for reading and writing, was too difficult. We requested that Amada be tested for an IEP. Right before Christmas break it was determined that she qualified for an IEP and would begin receiving speech and resource support. We began using curriculum more geared towards her level and needs. Because school was much more challenging now, it became increasingly difficult for Amada to focus and actually complete her school work. We debated having her attend public school the following year, but she was adamant that she did not want to. 

The boys were adjusting well to public school for the most part, with the exception of Johnathan's behaviors.  More IEP's and the addition of a mental health counselor who came to our home were necessary. Despite being turned down for Alta California Regional Center at least 3 times, we persisted and had Johnathan tested by a Neuropsychologist. This testing revealed that Johnathan had an intellectual disability, just like Alex and James, and was eventually deemed a client of the Regional Center.  

The following Fall, Rissa began attending Center Preschool, a full inclusion preschool. After several months it was apparent that her anxiety was worsening, so we decided to keep her home until after the Winter Break. Then when she returned, I attended with her to give her some security and share clues about her with the instructors. We also began seeking treatment from The Attach Place in the form of neurofeedback.  Her anxiety began improving!





In the Spring, when Joey turned 3 and also began attending Center Preschool. I was no longer able to attend with Rissa because of Joey's behaviors, but he became her security person. It was also decided that he needed to have an aide that would work him 1:1. This worked out nicely and I was able to dedicate more time to working 1:1 with Amada at home.  We decided to continue with the charter school another year. 




Fast forward through an entire school year which brings us to the present. With Rissa entering Kindergarten in a couple of months and Amada needing much more support than I can give her, we decided to enroll them both in our local elementary school. This will be the first time in over 15 years that I am not homeschooling in any capacity! And can I say that I am looking forward to it. I realized this summer that there is no need to scour curriculum, get my ordering done early in order to be on top of the planning, etc. and it is marvelous! I will however be attending a lot of IEP meetings throughout the year since all 6 children (currently at home) require them.

Please let me know if you have any questions and I will gladly answer them.