Update

Liv is walking like crazy now.  She started off slow and now walks all over the house.  Because of this, we decided to make a felt tree this year instead of having our usual tree.  I was worried she would pull it over or put it in her mouth.  Within 5 minutes of her coming home and seeing the tree, the ornaments were taken off and in her mouth.  I know I make the right decision.  Felt in the mouth is better than sharp ornaments.

We got a hospital bed for Liv to help her breath better at night and to help with digestion from the feeds.  It's great.  Once the nurse put the paper work through, we got it in less than a week.  It's on rental for a 3 month period but it will keep getting renewed because the same problems will still exist.

Liv's Developmental Pediatrician told us that she is still at a 12 month mentality level.  That means for the past year, she is still at the same level.  This gets frustrating.  We see her learn things but it's not enough to help her move up.  She says a couple of more words (even though she doesn't know what they mean), she walks, she sometimes follows simple directions, and participates at school.  It's hard to keep reminding myself that she's still a 1 year old when she doesn't look like it.  As a parent, you naturally start to progress your levels with the child but it's unnatural to stay at the same level.  I'm a teacher and I know how important it is to work with children on their level, so why do I have such a hard time with Liv?

Liv just loves her school so much.  The weekends can get tough because she is used to having a structured schedule all week long and we don't do that on the weekends.  I know she misses school on the weekends.  It's a perfect school for her and I can only hope the we can find something similar when it's time for her to go to kindergarten.

Ongoing Issues

First of all, I can't believe I haven't written since September.  I guess much hasn't happened since then.

Liv is walking now.  She's getting really good at it.  She can turn around and walk backwards little steps.  She's also good at going down to the floor.

Liv has had this sickness (or whatever you want to call it) that just won't go away.  After a month, they thought it was pertussis, but that test came back negative.  After a week on anitbiotics, she spent another week healthy.  She started up again this week with the same symptoms.  We are working on getting her a hospital bed that way she can sleep on an incline.  We were also told to add another doctor to the mix, a pulmonologist.  We need to figure out what is wrong with her lungs and why she can't breath at night.  That makes 9 doctors for a 3 year old.  Blah!

Neurology Appointment

Liv had a neuro appointment last week.  I wasn't looking forward to it because we were told when I went to schedule it that her Neurologist moved.  We were never notified of this.  This is the doctor that diagnosed her at the age of 7 months and now we will never see her again.

Since she was seeing a new doctor, she had to have an EEG to check out her brain waves while resting without seizures.  Then we had the appointment.

The new doctor seems nice.  I guess it will take some time to warm up to her.  We found out that she still has abnormalities in her brain (the memory section).  This wasn't a big surprise since we knew that from her last MRI.  The results of the EEG were a surprise though.  She actually has 2 kinds of seizures when we thought there was just one.  She has complex partials and generalized.  There was a lot of activity going on in her brain while hooked up to the test.

Liv hasn't has a seizure for about 6 months and according to history, she should be due soon for some spells.  They usually hit between 6 and 8 months.  I'm just hoping that we can surpass them and that the meds she is on are just working!

Some Good News

 Yesterday we went to the opthomologist for a routine check up since she had strabismus surgery 2 years ago.  He said that her eyes look great and we don't have to go back for another year!

We also went to visit a new school.  I have been feeling like her preschool has not been meeting her needs.  The curriculum is way over her head and the therapist are not communicating with me.  I'm not a parent that would tolerate this.  We tried it for 6 months and now its time for something better.  The new school isn't all inclusive, it's just children with special needs.  They have to be accepted into the program based on their disabilities.  There is an opening so we are working with her caseworker to get all of the paperwork in as soon as possible.  If all goes well, she should be able to start about 2 weeks after school starts.  That means she will continue at UCP until she is able to switch.  This school will be all day and all week long.  This will give her more opportunity for learning.  The place almost brought me to tears.  There was so much love in that school.  Liv would be in the lowest functioning classroom.  We got to visit all of the rooms.  They all sing a lot which Liv will just love.  There were therapist all over the place so I won't feel like she isn't getting her services.  I can't wait for this to be finalized!

Liv's so cute, I had to add a picture!

Surgery and MRI

Yesterday we had to be to CHOP at 6:30 am.  Liv was getting tubes put in her ears since her old ones became defective.  She was also getting a MRI right after surgery so she goes under anesthesia once.  Every time she has be on anesthesia, she needs a breathing tube because she stops breathing.  This was the first time she was seizure and breathing tube free.  She woke up and we got to come home instead of getting admitted.  I was very proud of her.  She was doing so well that we sent her to daycare today.  She just loves it there.

So Many Things Since Last Post

Liv was seen by Endocrinology and had high blood pressure again.  This can be a problem from her Turner's Syndrome diagnosis, so we were told she needed to see Nephrology to see if her kidneys are functioning.  Of course adding another specialist is just what we wanted.

We went to ENT and we were told that her tubes are no longer functioning and she needs new ones put in.  Great surgery!  At least they were able to schedule it the same time she's under for the brain MRI.

We went to Nephrology and everything checked out.  Whew!  I was really worried something serious was happening.  We don't go back for 6 months.

Liv was sick on Wednesday and was taken to the same person that misdiagnosed her shingles.  She told us that there was nothing wrong with Liv.  I found this odd because we were told by ENT that she had fluid in her ears, which leads to ear infections.  Liv had a temp and was lethargic.  So we waited until Saturday to get an appointment with her real doctor and she was diagnosed with an ear infection.  Big surprise!  Needless to say, we will never allow our child to see that nurse practitioner.  If Liv can't have surgery on Wednesday because she is still sick, we will be talking to administration.

Liv's feeling better today, but still not completely herself.

Liv's handicapped stroller and high chair have finally came in.  We get to pick them up tomorrow.  I'm so excited.

I guess that's everything!

Dev. Ped. Appt. Update

Well the appointment didn't go as well as planned.  I feel as if Liv is gaining in her progress, but the doctor didn't really think so.  In the 6 months we had since the last appointment, she gained 1 month.  She is really concerned about her lack of speech.  We were told to see a occupational therapist to have her tested for sensory processing disorder and a speech therapist to work on her learning words.  Mind you that she already has these therapies but she feels that it's not as intense and needs her to go through CHOP to get evaluated.  We have noticed her getting stronger since she started seeing their physical therapist, so we hope to see big gains when we start with the others.  It just sucks to have to make more appointments.  I feel like that's all we ever do.  She sees PT every Friday.  Now we are going to add two more therapists, yuck!  So the bad news is that they estimate her IQ to be a level 30 and intelligent disorder (mental retardation) is at 70.  She will be diagnosed as MR when she is 5.  I knew that was going to happen, but it hurts to hear it.  Sometimes I just wish God would come and heal her.  But I guess her purpose in life is to show others that they need to be determined and happy.

God's Little Gift

I never realized that I would have this huge of a mission in life.  I always thought I was going to be like everyone else and live a "regular" life.  I became a teacher in Philadelphia to help under-privileged children.  I'm a person that helps others and tries to do the right thing.  Then Olivia was born.

Olivia is the exception to the rule.  She has been diagnosed with two rare chromosomal disorders.  Putting the two of them together makes it so rare that her genetics team of 5 couldn't even find a documented history of anyone having the combination.  She walks a path all her own.

God gave me such a complicated child because it does take a special parent to care for special needs children.  Who would have thought I would be the chosen one?  All of us are children of God and as parents, we are just parenting the children He gives us until he feels they have made the impression He intended for them.  They will then return to him and be at peace.

 My body has been pushed to the limits and not in the way that I pumped too much iron in the gym and my muscles are having spasms.  Having a special needs child means being an advocate.  This is the toughest job I have ever been assigned.  Fighting for her to have the life she deserves comes with heartache and a ton of paperwork and phone calls.  I am a personal assistance to a 3 year old.  I work as hard as the personal assistance to the stars, however, I have this job every minute of the day.  She has 7 doctors and 4 therapists.  The people I spend the most time on the phone with are insurance companies and medical supplies companies.  She has to get monthly deliveries and fighting for her supplies is a frustrating battle.  In the beginning, crying daily was a normal thing.  I guess I have learned how to handle the situations better.

The reason I call her a gift is because of the people she has made my husband and I.  We were already giving to the community by teaching, but now we are teaching others in a different way.  We are teaching everyone that comes into contact with us how important life and family really is.  Stop sweating the small things because there's a much bigger picture in life.  We are meant to work as a community to help each other out while we are here on Earth.  The world has seemed to forget this.  I will push with every ounce in my body to get my daughter what she needs to have the most successful life she is capable of.  But I do know that she has touched more lives in her 3 years of existence than I have my whole life.   She shows others that if you have determination, you can work to get the things you need.  No matter how sick she can be lying in a hospital, she will make the nurses laugh and smile at her.  She feels the need to enlighten everyone's spirits.  We can go to a restaurant and her main goal will be to get as many smiles from as many people as possible.  How many of us can say that we do the same?  She is 3 and is my role model.

I now look at special needs children and only see beauty.  This is what my daughter has taught me.  I hope that either my daughter or another special needs child can touch each and everyone's life.  They really are special people.

Thank you God for granting me the opportunity to raise a child that is so inspiring to the world.

Only Olivia

On Saturday, we took her to the doctors to figure out what the bumps on her back were.  She told us poison ivy.  We told her that she has been sick and in the house, so we don't see how that's possible.  That was the only diagnosis she was giving us.

We went to her neurologist for a routine check up yesterday and she told us that Liv has shingles.  She even had another doctor come in to confirm.  They told us to go back the doctor to get a diagnosis.  We told them we might as well just go downstairs to the ER since the other doctor told us the wrong thing.  It was confirmed that she has shingles at the age of 3.

This Past Week

Liv was sick for several days.  We had to cancel 2 appointments because of this.  The first was was neurology, which we desperately need to go to since she had all of those episodes in March.  It's usually so hard to get an appointment, but since we were rescheduling, she has one on Monday.  We also had to reschedule her endocrinology appointment.  We recently received a letter in the mail that her endocrinologist is leaving so i have no idea who her new doctor is going to be when we go to the appointment. 
She started feeling better on Wednesday so I took her to the zoo.  She was more interested in looking at books in the wagon that being in the petting zoo or even looking at animals for that matter.
Friday she had PT.  She has learned how to climb up onto the couch independently.  I think this new PT is working great.  She fusses the whole time she is there, but we have seen a huge improvement in strength with just 3 sessions.
She developed a rash on her back that looks like poison.  I don't know how she would get that since she was with me all week and she doesn't go outside much.  Let alone how it would rub onto her back.  I'm hoping to get her into the doctors today so we know for sure what it is and how to treat it.

Update

Liv has been doing great since the pneumonia.  She has had great spirits and is just a delight to be around.  She is happy all of the time.  She has been taking steps without falling into someone.  She's gone on the potty several times.  And she just recently started using a pincher grasp.  I'm very excited for the new gains.  When she comes home from daycare, she has her work face on when she plays.  It's so cute.  She is getting into everything, and we let her.  I know at some point we will have to explain "no", but for now, it's great to see her so active.

PT Eval

Liv is finally getting a PT Eval through CHOP.  She has had a PT since 6 months but never a full evaluation.  This was suggested by her developmental pediatrician.  I called them in January to set up an appointment and they told me they would call me in a week to schedule.  I got the first call last month when Liv was admitted for pneumonia so we didn't get to go.  Then we were called last week and she goes on Friday.  I can't wait to hear what they say because she is a very sloppy walker.  I know that's why she doesn't walk independently yet.  I hope they can come up with ideas to help her.

All in a Baby's Day

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An Article from a Parent of a Special Needs Child

This article isn't meant to be pushy but just to get out how things can make parents feel being around parents of "normal" children.  This is the first time I've seen it written out, even though there isn't a day that goes by that one of these don't cross my mind.

WhenI set out to write 7 Things You Don't Know About a Special Needs Parent,I was a little nervous. I thought to myself, Whoam I to speak for all special needs parents? My situation feltunique, and maybe no one would relate to what I was going through. I wasencouraged by this post, though, and thought I would at thevery least write it for myself, and share it with my friends, since these werehard things for me to talk about.

Ihave been completely overwhelmed with the response to this article -- hugenumbers of Facebook shares, and special needs parents from around the worldcommenting on the article, tweeting and emailing me their stories and theirappreciation for voicing their hard-to-voice emotions. I've learned about rareconditions I'd never heard of, cried reading personal stories about affectedchildren, laughed out loud at some feisty responses to some of my points.Gratitude doesn't even begin to describe how I've felt about this wholeexperience.

Moreimportantly, the response has made me reconsider my third point, that I feelalone. I realize that I really am not alone. Thanks to technology, anincredible worldwide community of special needs parents is only a tweet orcomment or blog post away. Many thanked me for writing the article and makingthem feel less alone; now I thank them for making me feel less alone. (And thanks to HuffPost for giving usthis platform.)

Ithought I would follow up with another post, one that I've had in my heart towrite for a while. The first article expressed some of the emotions related tospecial needs parenting, with the goal of building understanding. So othersknow how much we go through -- now what? This article offers practical tips onhow typical folks can relate with and help special needs parents.

Oneof the hardest things for me to learn as a special needs parents was how to askfor the help and support I needed. And frankly, sometimes it felt like aluxury, when my more pressing concerns were getting through the workday and thenext therapy or doctor's appointment.

Butcommunicating and relating to each other is really important. Although atypical world can be miles apart from a special needs world, I will never giveup on trying to build bridges and understanding, because our combined worldswon't grow otherwise. I don't want to be a self-enclosed bubble (although I wasfor a long time). I don't want to grow apart from my friends with"typical" kids... especially when many of them sincerely want to knowhow to be there for me.

So,here's my list of nine ways you can help a special needs parent -- or me, atleast. Feel free to chime in and add your own.

1. Talk about your kids' personalities, not theiraccomplishments. I mentioned in the last post it can be hard tobe around typical moms, especially when they're bragging about their kids'accomplishments. When I hear a mom tell me that her 3-year-old knows all thewords to her favorite book by heart, it can hurt when my son can't speak. Andit doesn't give me a lot of room to say anything in return. I'm not inclined tomention one of my son's accomplishments, like he made the "B" soundthe other day, only to be met with compliments that can feel patronizing. Buthere's the thing: I'd love to tell you all about Jacob's personality. I want toshare with you how funny and weird he is, how mischievous he is, like how hesticks his finger in his nose all the more when I say, "Ew!," just toget a reaction from me. How he is affectionate, silly, and determined to gethis way. How he kisses fuzzies he finds on the ground, and is obsessed withelephants. I want to know about your kid's personality, too, which is probablymore interesting than his or her achievements, anyway. No matter how impaired achild is, he or she has a personality and a spirit, and the parent knows it.Let's start talking about who our kids are rather than what they can do.

2. Insist on helping. No matter how"together" I appear on the outside, I can always use help. In fact,sometimes appearing "together" is the only way I can make it throughthe day myself. You'll notice I didn't write "offer to help."Offering to help is lovely, don't get me wrong. But from experience, I oftenhave a hard time accepting help, even when I really need it. It's odd -- why amI trying to act like a superhero when I actually need help? Sometimes I doubtthe offer, thinking they just feel bad for me or are just being polite. But ifyou insist on helping, it'sfabulous because I feel like you will not take no for an answer -- it takes aweight off me. In terms of how to help, you can always ask, "How can Ihelp?" and if a special needs parent gives you some suggestions, that'sgreat. But if you find that this question is getting you no response, it's notbecause he or she doesn't need help. It's because she doesn't have the energyto figure out what to tell you. So if you love this person, be a detective andfind out how you can help (and make sure it's actually helpful to the person). "I'msending you a few cooked meals this week." "I found a few greatneurologists in your area." "I'll drive your kids to practice thisweekend." "I got you a housekeeper for a few hours." One way tohelp that will probably be universally accepted? Help watching the kid so theparent can have a break.

3. Stop with the maxims. I understandthat people just want to offer hope and encouragement and don't know what tosay sometimes. But I never knew a cliche or maxim that suddenly made everythingbetter. Examples of things I've heard that are pretty frustrating: "He'llbe fine." (How do you know this? And why are you diminishing what I'mgoing through?) "Everything happens for a reason." (A personalnon-favorite of mine.) "He'll get there." (Again, how do you know this?What if there are some things he will never be able to do?) I sense sometimesthat the maxims are really to make the speaker feel more comfortable with thesituation -- but they don't help me. Please lose the maxims. Just be there forme. Tell me my son is adorable (it never gets old). Listen to me, cry with me,laugh with me. I don't need canned wisdom, I need friends, ears, and helpinghands.

4. Extend me some grace. While insome ways my parenting experience is the same as a regular mom's, in many waysit's not. I can't begin to explain how hard it can be sometimes. Sometimes I'mexhausted from a rough week of doctors' appointments, or maybe you just caughtme in a sad moment wondering if Jacob will ever live independently, or whatwill happen to him if I go first (sometimes this can be triggered by thesmallest, most innocuous thing, like seeing a TV commercial or overhearing aconversation). If I am grumpy, snap, forget your birthday, cancel plans, orotherwise less than saintly, I hope you will just extend me some grace, andgive me the benefit of the doubt.

5. Stop complaining about your kids.OK, we all get a license to complain about our kids sometimes (special needsparents included!). But please be sensitive to what you complain about to aspecial needs parent. One of my dearest friends with a typical and sensitivechild would complain to me that her daughter had so many requests: she wantedher eggs cooked just this way, her pillow cold, her car window rolled down justthis much. I told her that I would kill for Jacob to be able to tell me thosethings, so that I could do them for him. He's non-verbal at almost 4 years oldand lacks the motor skills for enough sign language or the iPad (forcommunication apps), so it's painful when I see him so frustrated and unable toexpress himself. Don't complain to a mom of a non-ambulatory child that yourkid ran around and knocked over your favorite vase. Save those complaints foryour other friends, or don't make them at all. Because know that your complaintabout your child might be our deepest wish for what our child could do.

6. Ask me how I'm doing. Often thefocus is so much on our special needs kids, that the parents are overlooked.And guess what? We are driving the boat. Without us, our kids would be introuble. The parents need tending to as much as the kids do. My friends oftenask me about Jacob (see #7 here for a more helpful way to ask),which I love, but it would also be nice if occasionally they asked me about howI'm doing -- not in my career, or my hobbies or dating life, but how I'm doingin this role as a special needs parent. I don't often get to talk about howhard it can be, or how I'm tired, or how I had a good day or bad day. It mightjust be me, but a sincere "How are you doing handling everything?"once in a while, and readiness to hear an honest answer is all I need to feellike someone cares. Alternatively, sometimes it's just good to talk about otherstuff ... so please go with it if I do.

7. Coercively pamper me. I don't knowany mom, special needs or not, who will say no to a beautiful bouquet offlowers or a massage. I learned the hard way as a single parent that no one wasgoing to pamper myself but me, so I got good at treating myself (if you're asingle parent, read this to learn how to take care of yourself).And my son is much better for it -- he has a happy and energized mom who feelsgrateful that blue cheese tastes so good, or that her nails look nice (for somereason I always feel like a happier mom when I'm a little more put together!).Call this a shameless plug for more treats in life since the world's cards arestacked against us. A little treat with a note like "You do so much forEm, just wanted to make sure you're taken care of too" will probably dowonders for a parent's day, or week.

8. See my child. Don't stare. Butalso don't look away or avoid. My deepest wish is for you to see my child theway I see him. Look into his eyes. Observe him with love. See him. Get to know him. Include him,hang out with him, get your kids to do the same. Learn how to treat him withdignity and the profoundest respect, because a wise woman once told me that insome cultures, special needs children are seen as the human form closest toperfection and God, because they are no longer here on earth to learn, but toteach. In these cultures, the elders all bow down when a special needs childenters the room. Oh, but that we might become one of those cultures! One of themost hurtful things for me as a special needs parent has been seeing others,even my friends, uncomfortable or awkward around my son. Please find a way tostart really seeing and loving my child. It might start with spending more timewith him.

9. Support my cause. At the veryleast, you can support my cause. I might not be close enough to some people inmy life for all of the above points to apply, but it's meant so much to me whencolleagues donated or ran to support my fundraising efforts for my son'sschool. You can speak up when other people say things like"retarded," "short bus," or "as long as it'shealthy" and explain why it's insensitive. You can stopbullying or teasing if you see it. You can stop being impatient with thecheckout clerk who seems to be moving more slowly. You can stop gaping ormaking rude comments at kids who look or behave differently out in public. Youcan stop making fun of disabled people (it sounds horrible, but we do it muchmore frequently than we realize)--or pitying them. You can cast special needskids in advertising campaigns, TV shows, movies (hint: Jacob loves the camera,he's a total ham!). You can make an active effort to have special needs kids bea part of your typical kids' lives. You can get to know us.

Moreover,you can stop seeing people's worth in their abilities -- their intelligence,talents, looks, achievements. You can start doing what's actually the harderbut better thing: knowing and loving them just where they are.

That'swhat my son has taught me to do.

That'show I hope you'll come alongside me.

By Maria Lin

Olivia's Facebook Page

I created a Facebook page for Olivia to keep everyone posted on items that don't need a drawn out explanation.  Also I put pictures and videos on it.  Don't forget to like her.
Olivia Ericksen

GI Appointment

We went to the GI on Monday.  The news wasn't so good, but it was what I expected.  She stopped gaining weight since we lowered her Pediasure intake during the day.  It's been about 6 months that she has been around 25 pounds.  So we had to up her intake during the night.  We have to increase it a little at a time but she will eventually be up to 3 cans instead of 2.  She will keep drinking one can during the day along with eating whatever she wants.

It's hard to fatten a child up in a world that is trying to go fat-free.  Most cheeses are made with skim milk and same with yogurt.  I'm trying to look for fattening things and don't really find too much except for unhealthy food.  Obviously I don't want to have my child eating only junk food.

So I guess the questions will be arising is why she has such trouble gaining weight?  Is there something medically wrong with her that she can't?  Will she be on the tube forever?  I'm not seeing an end in sight any time soon.  She has had it for a year already.  Boy time flies.  What does this mean when she starts school?  It's hard to picture her in kindergarten with a tube, but I don't see it any other way.  She has had several tests done and nothing showed signs of their being a medical problem, but I'm sure they have more tests on their mind.

So now we just have to sit and wait to see if she gains weight.  We have to do a weight check in a month.

Those Random Fevers

Well there's been a lot going on.  I found out the random fevers were caused by pnemonia.  We tried to treat her at home, but we could only do it for a day.  She was admitted into the hospital on Thursday.  While here, they discovered a second pneumonia.  She does well for part of the day.  She is off the IV and is getting fed pedialyte through the gtube.  We tried her normal pediasure but there were complications with that feeding last night.  She started throwing up mucus and spiked a high fever.  They thought she was getting better and that we would go home today but then last night changed their minds, and mine.  I can't take her home and take care of her.  That's a hard thing to say as a parent, that you can't care for your child.  But reality is, we haven't been able to.  That's why we have nurses throughout the evening.  It's hard seeing her so sick but it is easier than watching her have seizures.  I feel like I'm in prision.  I can't leave the room unless someone is here to watch her.  My eating schedule revolves around that.  The weekends are easier because Drew can come here and we rotating eating shifts.  All Liv has gotten to do is sit on a bed.  I'm taking another week off work to be with her, even if we do go home.  I'm missing freedom!

Weird and Sporadic Fevers

For the past 2 weeks Liv spikes fevers of 102 at completely random times.  No symptoms of being sick.  She did great all weekend long.  It was the first time in a month that she was finally back to her old self and then bam - she gets a fever this morning.  I'm taking her to the doctors today.  Hopefully they can figure out why there's no rhyme or reason to these fevers.

Epilepsy Walk

The walk was not was I was expecting.  It was great to see so many people and sponsers and good vibes, however, I was not having good vibes.  Being there made me cry.  Everyone is so happy and supportive to the ones they came with.  I only saw 2 children younger than Liv that had epilepsy.  I didn't get any connections like I had hoped.  When I talk about my daughter's complications, it makes me cry.  Maybe someday I will get past that.  Everyone was in such good moods like they don't have a complication.  I understand you need to embrace it, but it doesn't mean that it's not scary and that it's easy to live with.  So as we are walking (and Liv is sleeping), I saw a family that had shirts on that said "in loving memory" and had a picture of a girl that was about 5.  That really made the tears flow.  I mean they lost their child and are still there walking to support.  What's even weirder to me is that they were in good spirits too.  Why am I the only one so upset?  Most people had large support teams there with her and we only had the three of us.  It was sad.  I'm glad we raised about 800 dollars though.

Epilepsy Walk Day 1

We are headed to DC now. Of course there's traffic, but Liv's asleep so that's helpful. It's exciting to get away. I can't wait to see the hotel. It's right downtown and next to everything. Hoping for a good time!