Hello!  My name is Rebecca Lankford and this is my daughter’s story.

I was pregnant during the fall/winter of 2004. During that time pregnancy was normal, no complications. During my prenatal check up on Friday, May 13, 2005 I mentioned to the midwife that Rachel’s activity was not like normal. They sent me up to the maternity unit to have a no-stress test. They did not like the results of that test so they put me on bed rest for the weekend and sent me to a specialist in Johnstown on Monday May 16, 2005.

Johnstown

Monday we arrived at Dr. Khouzami’s office in Johnstown, PA (about a 2 hour drive from home) and they did an ultra sound.  The doctor viewed the results and told us to go across the street immediately – I was being admitted to the hospital!  This was a complete surprise – we were far from home and no suitcase!   First they did blood work and an overnight no-stress test.  The next morning May 17^th they told me they did not like the results of the blood work.  I had two different blood types which meant Rachel was bleeding out.  She had lost almost all her blood volume.  She needed to come out, but an induced labor would put too much stress on her.  The safest option would be a c-section, which was scheduled for May 18, 2005 at 5:30 pm.  What a shock! I was planning on having my check up and going home, but now I am informed I was going to have my baby!

That night when I was laying in the maternity ward I heard many babies being born. They gave me caffeine shots to help Rachel’s lungs prepare to work when she was born.

Rachel was born

May 18, 2005 at 5:38pm Rachel Elizabeth Lankford was born. 3 pounds 7 ounces 17 inches long.  The room was a flurry of activity.  So many nurses, doctors and anethesiologits.  In 10 minutes flat she was out and we heard her cry.  They wrapped her up and held her up for us to see her face.  She was BEAUTIFUL. I only got to see her for a second. She was very anemic and ill, so they took her straight to the RICN unit and put her in an incubator and on oxygen. She was so tiny.

During the C-Section they found the problem.  The reason for the anemia was due to a tear in the placenta and if they didn’t take her when they did she would not have survived.  John got to see her about 3 hours after she was born, but only for a few minutes.  He videotaped her and I got to see her played back on the camera.

The next morning I was sore, but well enough to walk to the RICN to see her.  She was a tiny body in this big plastic incubator. Covered with heart monitor stickers and wires she had a feeding tube and a c-pap breathing mask as well as a pulse ox monitor on her tiny foot.

When she was one week old they took her off the c-pap and put her on a nasal canula.  The following weeks were an emotional rollercoaster of one crisis after the next.  Most days she was just a quiet little thing laying there slowly breathing.

She ended up with jaundice (which I was told was normal).  So she had bili-light treatment for a few days.

She also was not peeing, and her condition was worsening.  So after some X-rays, her doctor decided to do a catheter and when he was inserting it he hit resistance.  He pushed it through and about 3 or 4 ounces of pee came out. She had a blockage! After that her condition improved and we breathed a sigh of relief that she didn’t need surgery!

As she grew stronger I was finally allowed to hold her!

We tried feeding her, but she just never had the strength or coordination to do this.  She’d try her hardest, but would tire out before finishing.  So we had a feeding specialist come in and we worked with a fast flow nipple on a little two ounce bottle. It would take FOREVER to get those two ounces in her!  Slowly, she did better and better.

During our stay we had many visits from our brothers and sisters we are so pleased to have the support and encouragement at this most difficult time.

Rachel had countless X-Rays, several CT Scans and MRI’s.  She had so much radiation I worried she would glow green!  At least once a day, they would draw blood for her anemia.  They pricked her arms, legs, feet so many times they ran out of places they hadn’t drawn blood from.  They also needed to change her IV location periodically.  She had her IV in both arms, both feet, and once in her scalp (because there wasn’t any other place that hadn’t been pricked or poked too much.)  It was heart-wrenching.

When she was 4 and a half weeks old they did a hearing test and she failed. They did that test about 5 times. So when we finally were sent home we would have to make a audiologist appointment.  An MRI was done and the neurologist said that her anemia affected the back part of her brain that controls eyesight, muscle control and hearing.  He told us there was a chance she would never see, hear or walk.  It was an emotional blow, but we tried to be positive and hope for the best.

Rachel was in the hospital for 5 weeks and then on June 7, 2005 she was finally allowed to come home. We had to do a stress test for her before we could leave. (put her in her car seat and watch her vitals) She passed!  She was so little the carseat seamed HUGE!

The night before we brought her home, we were finally allowed to bring her into our private room.  Five weeks after she was born, she was finally out of her incubator and we were able to hold her and be together as a family.  She was still on oxygen, and required a Pulse-Ox (monitors pulse and blood oxygen levels).

Dr. Chan (seen below with Rachel the day we left) was her primary doctor the entire time she was in Johnstown, PA Conemaugh NIC unit.  It’s an outstanding facility and the care she received was top notch.  Becka stayed with Rachel 24/7 for 5 weeks, so we formed lasting bonds and friendships with all the nurses and staff at the hospital.

Home Finally

While we were in the hospital Daddy and Uncle Craig scrambled to get her room finished. Daddy thought he had two more months!

The room was beautiful! Rachel slept in our room while she was on the monitors.  They were annoying! It was constantly going off and you would jump up and check on her every time but it was just because it couldn’t read her oxygen level because she was moving and it interrupted the connection. At the same time, you couldn’t ignore it because sometimes Rachel had quit breathing and needed “reminded” to start again.  It went off constantly through the night.

She was three months old when she came off the oxygen and monitors.  Till then we had to drag her oxygen tanks and monitors with us wherever we went.  You can see them to the left in the picture below.

In August of 2005 we took Rachel to an  Audiologist in Hershey, PA and they diagnosed her as being profoundly deaf in both ears. Heart breaking news, but all the prior test had pointed to it!  It was then that we were introduced to the cochlear implant, a device that might allow her to hear!  The news was so sad, but the implant was a silver lining.  She would have to have another MRI and other tests, which would be scheduled later.  She would also have to try hearing aids first.  We also saw a hematologist while we were there because she was still anemic and he recommended a therapy that after doing research on it we were comfortable with it.

At this time, we were going to the pediatrician weekly for therapy but we also went to the children’s hospital of Pittsburgh audiologist to get her fitted with hearing aids. (which were so cute!   Pink and tiny!)  We had her tested at a local audiologist to see how well the hearing aids were working and the results were that they were not helping.

This audiologist liked her so much they used her in a commercial they were making for tv to advertise their office!

Pittsburgh ENT appointment

So back to Pittsburgh we went for an ENT appointment with Dr. Hirsch, the surgeon that would perform the cochlear implant surgery. He told us that Rachel was an excellent candidate for the device.  He told us about the implant and explained how it bypasses the entire inner ear and directly stimulates the brain. He informed us that with this device she had a good chance at hearing normally! Wow! We were so excited!  We picked her left ear (as the right still had some residual hearing, and she favored laying on that ear)  The only thing is we had to wait until she was 12 months old before the surgery could be performed safely.

Feeding her was a daily chore. 5 times a day she would eat 12 tbs of cereal for breakfast and sometimes ranging up to 20. 1 can of Campbell’s chunky soup blended (she has severe texture sensitivity) and mixed with cereal to thicken. This will be split up into two or three meals with a pudding cup to follow. Each meal took about an hour because she had such problems swallowing.  She would gag and many times she would throw up everything she had taken so long to eat.  Each meal was very stressful and we spent a large percentage of the day feeding.  She loved milk, but only a few drops at a time. She was using a bottle for liquids only for a long time. We tried a sippy cup but to no success. She couldn’t get the sucking pattern to be able to use it. We started focusing on trying to get her on solid foods. Ravioli was successful.  She ate a lot, but really didn’t gain much weight.  She was always very tiny.

Cochlear implant surgery

August 25, 2006 Rachel had her cochlear implant surgery at Children’s Hospital in Pittsburgh, PA. The surgery lasted for several hours. During which we had the wonderful company of brothers and sisters from our hall who traveled to give us support.  The Dr. said Rachel did excellent.  During the surgery, they are able to test the device.  They said Rachel responded beautifully!  It was success!  We knew that one day Rachel would hear!  We stayed overnight for observation.

We had to wait a month for her to heal before we could get the outside part of the device that allows her to hear. September 25, 2006 was her activation date!  They programmed the processor and turned it on.  The first thing she heard was a few short beeps.  Her face lit up and she smiled wide!  She could hear! What a wonderful thing! Her response to finally hearing sound was amazing!  (click play below to see it)  This was a really good day – one we will never forget.

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She now loves hearing so much that if her Speech processor (the magnet outside that holds it on) comes off and she cannot hear – if we don’t put her implant on, she will get mad and nothing but putting it on will satisfy her. She now will not go to sleep without it on and sometimes wakes up when you take it off. So she sleeps with her implant on. It is on 24/7.  She loves hearing!

Home again

When we got home from the surgery, we had fun making noises just to see her reaction! It was wonderful to know she can hear her mommy’s voice!

Cerebral Palsy diagnosis

We had early intervention services for Rachel (physical therapy, occupational therapy, hearing therapy). During which Rachel was not meeting the normal milestones that kids reach. So we made an appointment for Rachel with a specialist and in November 2006 Rachel was diagnosed with Dyskinetic Cerebral Palsy. We were devastated! So now we were running to Pittsburgh every month or so for Audiologist appointments and now to Indiana, PA for Cerebral Palsy doctor appointments. We are currently affiliated with United Cerebral Palsy and we have an Elks nurse that comes every so often. They are a great resource and very helpful. They have a UCP picnic every year at Lakemonte amusement park we enjoy that. It is so fun to meet all the other clients and just enjoy the day.

Therapy issues

We continued our Home therapy praying that it will help. ( I am sure it is) When we moved to Bedford County in 06 we got new therapists. The program changed to a new provider in 07 I had to fight and call and write to many people to get Rachel’s therapies to get started back up. We were promised there would not be a lapse in service but there was several weeks when we had no therapist coming. It was not until I got in touch with the county commissioners that things got started.

But finally it did and we got a new hearing therapist, which was actually the wife of the dean of the Western PA School for the deaf. I was so happy to be associated with that school! I really enjoyed her. She was now getting PT 1 hr a week, OT 3 hr per week, ST one hour a week, HT 3 hours per week!

Equipment

We got some equipment to help with Rachel and home therapy. She has a Tilt in space wheel chair that she uses for the most part.

She also has a sit to stand stander. They both work very well and her head control is increasing. She enjoys both pieces of equipment.

When she uses her stander we put her in afo’s (foot and ankle braces). She tolerates the stander in the standing position 1 hour minimum a day, sometimes we have really good days and she will stay in for 1 ½ hours.

Preschool

At the age of 3 she no longer qualified to have Early Intervention services. She turned 3 on May 18, 2008 and started preschool May 19,2008. I was petrified to send her. But I knew it would be good for her to get that kind of stimulation and be on her own. They have more of an educational focus. I had to fight to get her all the therapies I wanted there. OT 1 hour min a week, PT one hour min a week and HT 2 hour min a week, ST one hour min a week is all I could get. I still was not happy but that was the most I could get for her.

Therapy

Since I was not content with the amount of therapy I take Rachel to out patient therapy at the Bedford Hospital twice a week. Tue and Thur from 9-11:30. Each of those days she has ST for one hour ½ of that is a co-treat with OT, PT for 1 hour ½ of that is co-treat with OT and ½ hour with OT one on one. It makes for a busy schedule but it is worth it.

Children’s Institute

August 25, 2008 Rachel was admitted to the children’s institute of Pittsburgh.  The reason we went was to try to analyze why Rachel wasn’t gaining weight.  She was 3 yrs old and 19 lbs.  We wanted to work on Rachel’s feeding skills and try different therapies.  We stayed in a room together (kind of like a hospital room but much nicer). We were there for 5 weeks and during that time she had intensive therapy every day. We met many brothers and sisters that will always have a special place in our heart. We also met many doctors and therapists and nurses that were extremely nice. We liked the doctors so much we started going to them regularly.

One day the speech therapist noticed Rachel sounded raspy after eating so they ordered a barium swallow test be peformed.  That test showed that she was aspirating food into her lungs.  Her doctor explained the seriousness of this – if she aspirated her food it could cause pneumonia.  So we considered the options and decided the only choice was to have a feeding tube inserted.  The other issue was she struggled so much to eat a meal, she would burn all the calories she would take in just eating it.  A feeding tube would allow her to get 100% of the calories she needed even when she was sleeping.

Unfortunately, she was not allowed to eat by mouth anymore.  The inserted a NG-Tube through her nose to feed her.  That was a terribly tramautic experience.  One nurse would hold her down and another puts the tube down her nose.  Rachel would scream and sneeze until it was over.  Once she was used to it she would tolerate it pretty well.  But, several times she would get her finger on it and pull it all the way out – only to go through the process all over again.

We were transported to the children’s Hospital to meet Dr. Katz for an evaluation then several more times for pre-op tests and the date was set for September 25,2008.

Mic-Key button surgery

On September 25,2008 we were discharged from the Children’s Institute and admitted to the Children’s Hospital and prepped for surgery. The surgery took about three hours. It was wonderful to have friends from our hall travel all that way to sit with us during this surgery.

When the surgery was finally over we got to see her in recovery she was so groggy but the surgery site looked amazing! Her surgeon was excellent – the incision was so clean and neatly done!  The only gross thing was an extension that was attached to the button was draining blood out of her stomach into a bag. YUCK!  But the good news – no more NG tube!  After two weeks her nose was empty at long last!

We got out of recovery and took her to our room. She rested that entire day and the next morning she stuck her tongue out at me.  Even though she was hurting she wanted to see me smile.

We stayed there about a week having roommates come and go. She pulled out her iv a couple times itching because of the morphine. I had them switch her pain medication so it didn’t maker her itch so much. The day after the surgery they also started feeding her. When she was eating 40 ml/hour they were going to take out the iv. Well She was at 25ml/hr and pulled the iv out. They called the dr and the dr said it was close enough don’t put another one in. PHEW!

When we arrived home there was a nurse from community nursing come in that night and help us learn the pump and how to use it. Gradually we increased her feeds until we met the doctors goal.

Finally she was getting the nutrition she needed!  In the first month, she gained 10 pounds.  It was amazing.  She filled out so fast – her face got chubby and her arms and legs got much bigger.  She had so much more energy because she finally were getting calories.

A month later we had a check up with the surgeon and she was pleased with the healing and we have been following up with the feeding clinic at the children’s institute every 3 to 6 months. They have been adjusting her calorie intake goal and pump speed. She is now up to 237 ml gravity feed boluses 5 times a day. Yay! The convention is going to be so much easier! Better than dragging that pump everywhere!

She is recovered back in school and back in our routine.

Our schedule

Isaac home schools so we are home Mon, Wed and Fri. Rachel has school Mon-Thur so she gets on the bus at 11:30 am and gets home at 3:45.

Tues and Thurs we get up and get showered have breakfast and leave at 8:15 am to be at her therapy by 9am. She has therapy until 11:30 then we drive straight from Bedford to her preschool in Martinsburg. Preschool starts at 12:30 I drop her off and do grocery shopping then come home. She gets home at 3:45.

Communication

Rachel still does not talk. She babbles A LOT but no words. She knows a lot of sign language and can do a little.  She tells you she wants to watch tv, needs a new diaper, wants to eat, she can sign I love you and pig (for when she wants that toy), daddy, mommy, Isaac. She can match some signs to letters on flash cards and she understands just about everything we ask her in daily life. She understands sounds as well. When daddy or Isaac talk she knows and looks for them. When the phone rings she looks for it excitedly hoping it is for her. She has a cd she likes and if she wants to listen to it nothing else is good enough.

I started Rachel on Tom and Jerry when she was younger because of her deafness. You do not have to hear that to understand what is going on. I needed “mommy time” and was thrilled to find something to occupy her for a little bit. When her show was on you cannot get her attention because she is so into it. She will actually laugh and kick her feet with excitement when she likes certain parts. Sometimes when a certain episode starts she reacts the same way. I think she remembers the episode and how funny it was the last time she saw it. When the credits start rolling when the show is over she will start to complain to tell you “please start a new show”. She likes her tv shows and if you turn on one that she doesn’t want she will let you know by complaining until you get it right. I am working on making a communication book so she can pick the picture of what she wants. (ex. I am printing out pix from each show so if she wants to watch Dora the Explorer she can point to the photo of Dora) Her selection has grown thank goodness.. She really enjoys AFV.

She will tell you if she wants to listen, if you ask her if she wants a bath she will get all excited, if you ask her if she wants to go to bed she will either smile (yes) or fuss (no). If you tell her she is beautiful she will smile sweetly and shrug her shoulders as if to say “I know”.

She will also tickle you. She will turn away with a big smile pretending to ignore you. She also shakes her head “no” being silly.

She loves to stick out that tongue of hers. Sometimes I am doing house work and I walk through the room and her tongue is sticking out as she bites down on it to hold it out as she smiles. You cannot just walk past her when she is doing that it is so cute you have to stick your tongue out back or I just kiss her because she is so adorable.

She has begun to repeat some sounds and tones. You can tell her “I love you” we do it in a low soft slow tone as if we were singing it and she repeats the tone and syllables.

Personality

She has a wonderful little personality. She is happy all the time and loving and a tender heart. She plays a pouting game… She puts her bottom lip out and you do it back she laughs at you.

That will continue that until she no longer can push our pout out past her smile then she will pack her tongue down behind her bottom lip to push it out. She will do the same thing with coughing. Sometimes she forces a cough out so much that she strains her whole body and turns red in the face. She will play a yawning game with her daddy. She will yawn he kisses her all over her face and she will fake another one.

She is very sensitive. If she thinks she upset you or thinks you are upset about something she will start to cry. If her brother is in trouble and gets yelled at she cries.

I take her and her brother to double appointments so it is only one trip to the doctor instead of two and when it is her brothers turn she sucks in a lot of air and puffs up and pouts because she is afraid the doctor is hurting him even if she is just listening to his heart/lungs.

She loves her brother and daddy so much when they walk in the room she almost jumps out of my arms. She loves boys and men she will practically break her neck to watch them as they walk past her. (sometimes you would think she was an owl.)

Cognitive

When I work with Rachel on different things. I use flash cards a lot because she is visual hands on learner. She knows the different pictures. If you hold up two cards ask her to point to … say the cat when you are holding a cat and a dog. She will point to the cat. Then there are days were she is flat out rotten. She will look at you with a little rotten grin and point to the dog and laugh.

Activities

Rachel has taken up water color painting and loves it. You can see her photos on our website www.lankfordphoto.net under the special needs tab.

She usually paints about 7 pictures before she is done. I put the brush in her and and hold the paint within her reach. She dips the color she wants and paints away. She will hold up the brush when she wants more paint and complains when her painting is done and wants a clean sheet of paper. When I put a new paper in front of her she gets quiet and starts painting again. I hang the paintings on the wall to dry and when she is completed with her painting session she sits there and looks at her wall of paintings with a smile. Pleased with her accomplishments.

Girl Through and Through

I bet you would never guess.. But did you know girls like shopping? J Rachel does! If you put something on her to see how it looks you will be buying it and taking it home. If you take it off it breaks her heart. Shoe shopping is a night mare… She has narrow feet and sometimes you try three different pair before you get one that fits properly since toddler shoes are not labeled wide or narrow.

Pets

She does not have any problem telling you what she likes. If you walk past something she wants she will throw a fit. We were in Wal-Mart and walked past the fish. She got upset. So I backed up and let her look at the fish a while and then figured she had enough and continued shopping. As soon as we walked away she started with the crying and yelling I figured she would get over it and stop. 10 minutes later she was still at it so we found someone and bought some fish. Rachel did not stop crying until she saw fish going into the bag. The lady was nice she cornered a couple fish and the ones Rachel showed the most interest in she put in the bag. I got her 4 gold fish and a tank, rocks and food. I got myself a plecostomus because it would make my job of keeping the tank clean easier.

I put the fish in the cart she was ecstatic and then I got a net off the rack and she wanted to hold it. She held it the rest of the way through the store and at the check out they had to scan it while she was holding it she cried for the two seconds I had to take it from her to buckle her in the car seat and held it all the way home. She was asleep when we got home but still had a death grip on that thing. I pried it from her hand to get her out of her car seat and she whimpered in her sleep but only for a second. I put her in bed and put the tank together and put the fish in.

Every morning first thing she looks for her fish and when she comes home from anywhere she looks for those fish and she loves to sit and just watch them.

Thank you for taking the time to read Rachel’s story. We are glad to help you get to know her and understand why she is so special to us.

Please keep checking the blog for updates.

Last updated: March 30,2009