What 1 year of my daughter’s TSW has taught me

So, my husband and I have spent the last year watching our daughter go from a beautiful, energetic, athletic, friendly child to an introverted, recluse to somewhere in between.  She is clearly on her way to getting back to herself but we do worry about any permanent damage to her psyche.

We have learned a lot of things this past year and not just about skin.  We learned how much we can do with very little sleep.  I learned that having a clean house isn’t the most important thing.

We learned that we have some of the best friends on the face of the earth.  Friends who constantly checked in, friends who checked in occasionally, friends who have so little time themselves but managed to send texts or emails or phone calls when they had a moment.  These friends pulled me out of such darkness and I will forever be grateful.  I have heard about so many people who are going through this alone and I can’t imagine how they do that.  We also learned that there are a few people who aren’t such great friends.  These people didn’t really surprise us but confirmed what we already knew.  We also learned that my daughter has the most amazing classmates and friends.  They never teased her.  They protected her and cared about her and showed intense compassion at such a young age.  The world could learn so much from this group of children.

I learned that sitting on the couch with my daughter EVERY day for hours was more important than my job, my hobbies, spending time with my friends, my body, my housework, her schoolwork, etc.  Some people will say that I should still take care of myself because that will help me take better care of her.  That is bullshit.  At the time the most important thing was sitting on that couch, holding my daughter and making her feel better.  There is nothing more important than making your child feel secure and loved when they are are struggling.  If I had to do it over again I would still choose to sit on the couch with her.

We learned to listen to my daughter.  She has a voice but since she is a child, we tend not to hear her.  After hearing how horrible this process is, from the adults suffering through tsw, I realized that we needed to pay attention to what she was saying.  There is no way to know what someone else is feeling unless you listen to them.  Once we started listening to her more, she started to explain things in more detail.  It really helped us to understand the pain and discomfort she was in.

We learned that we have to speak up for our child, since her voice is ignored.  We had to make sure that her school did everything that was needed to help her get through this.  We were lucky that her school environment was wonderfully supportive.  Her teachers, school nurse, principal and school psychologist wanted to help her.  We had to guide them by explaining what she needed.

I learned that no matter what happens after this is over, I will never take doctors at their word again.  This horrible experience has taught me that trusting my gut is what I should do and what I should have always done.  I didn’t listen to my instincts because I wanted to believe that my daughter’s doctors could heal her, even though I knew they were going down the wrong road.  I don’t hate doctors.  I do believe that they sometimes take the easy way out by handing out prescriptions without giving any other options a thought.  They need to open their minds and accept that sometimes they need to look at alternative methods.  Hopefully one day more doctors will accept that Topical Steroid Addiction does exist.

I am sure I learned more but I am too tired to remember!  Good luck to anyone who is going through this.  Don’t give up hope.  It will get better.  No matter what, anything is better than the roller coaster of Topical Steroid use.

Posted in What 1 year of Topical Steroid Withdrawal Taught Us | Tagged , , | Leave a comment

TSW Month 12

One Year down.  One FUCKING Year of HELL!  I know that I should be thankful for the progress that I have seen in my daughter’s skin.  I should be thankful that she will be cured and that this isn’t a terminal disease.  I should be thankful that my daughter is able to go to school and spend time with her friends and not in a hospital.  I am thankful for all of those things but I am so angry and tired that I just can’t see that most days.

If you are just starting TSW please don’t let this discourage you.  In some ways, this is the best thing that ever happened to us.  We finally figured out why our daughter’s skin was suddenly getting worse.  We could tackle this problem instead of having no clue what the problem was.  We now know why her skin was deteriorating.  We have something to work towards.

So, where are we now?  The itch is insane at night – every night.  Sometimes antihistamines help her sleep but sometimes they don’t.  We try to use them only when absolutely necessary.  Certain antihistamines don’t help with anything.  I don’t think that anything has ever touched the itch, they just make her comfortable enough to sleep or they make her drowsy.

Her skin is showing improvement.  She still has the same problem areas – Face, Neck and Lower Back.  Her wrists have been bugging her a lot the last couple of weeks.  She rubs them and then the skin breaks open.  They are much better than a few months ago though.  Her hands and ankles as still pretty thick and dry but are so much better than they were.  We have seen slow and steady progress with some set backs thrown in.  Her energy is better.  She said that if her face looked better she would go back to gymnastics.  She doesn’t want to go to the gym looking the way she does.  I can’t say I blame her.  She has been more active.  She has even been wearing her leotard.  Other than bath time, dressing time and the one time she swam at Disney, I haven’t seen her skin exposed since February of 2013.

The air only bothers her oozy spots, which are only on her face and neck now.  She is still super dry and flaky in the problem areas.  She said that her skin still hurts all the time, which makes me very sad.  The end of this month has brought us terrible sleep and some depression.  She has been so sad that it breaks my heart.  She is so uncomfortable with the way her face looks and I am just at a loss.  Ever since the set back in Week 33, her face has not been doing well.  One day it will be bright red and the next day it will be fair but super dry and flaky.  The oozy spots are getting smaller but she rubs so hard sometimes that she creates new ones.  We have tried using apple cider vinegar on the oozy spots on her face to see if maybe that will help a little.  I don’t notice a difference since we starting doing that but it certainly isn’t hurting.  I think she just needs time and rest.  ARGH!!!!!  I just want to scream!

So here are some pictures to show where she was in this 12th month of tsw.  I am not sure if you can tell but her arms, legs, back and feet are getting back to her old color.  Our daughter is half Jamaican and half German, so she used to have a beautiful light caramel complexion.  We haven’t seen that color in years but it is starting to come back and I forgot how gorgeous it is.  Those areas are very soft and smooth.

Forehead 1-28-14Week 51

Forehead 2-7-14Week 52

Forehead 2-11-14 Exactly 1 year

Nose and Mouth 1-28-14Week 51

Nose and Chin 2-7-14Week 52Nose and Chin 2-11-14Exactly 1 year

Neck 1-28-14

Back 2-8-14

Back 2-11-14

Chest and Stomach 2-11-14

Shoulder 2-7-14

Shoulder 2-11-14

Arm 2-11-14

Arm 2-8-14

Hand 2-8-14

Hand 2-11-14

Wrist 2-11-14 2

Legs 2-11-14

Back of Legs 2-11-14

Legs 2-8-14

Back of Lower Legs 2-11-14

Feet 2-8-14

I still can’t believe that it has been a year and I can’t believe that I am going to say this, but it went faster than I expected.  I think because I was preparing for the worst, it seemed faster.  The days were long and it seemed endless but we survived.  I don’t know if that makes any sense.  Considering how little sleep I got in the past year, I am surprised if I ever make sense.  The frustration is setting in though.  My daughter just wants this to be over already and so do I.  My husband is angry and frustrated that he can’t help her.  We all seem to be at each others throats lately.  I just wish there was a way for me to speed up her healing.  We no longer try anything new though because we know there is nothing that will speed this up.  We just keep doing what makes her comfortable and hope the next year brings us a completely healed daughter.

Posted in TSW Month 12, Uncategorized | Tagged , , , | 20 Comments

Photo History of My Little Red Warrior

I remember how much pictures helped me at the beginning of my daughter’s topical steroid withdrawal.  I remember seeing the first pictures on ITSAN.org and just knew this was what we were dealing with.  I would look at before and after pictures for hours.  It really helped give me hope.  Showing my daughter pictures of people who were close to healed or healed really helped her too.  For me, knowing how bad it could get helped me mentally prepare myself.  I don’t know if you can ever really be prepared but it did help.

Unfortunately the lighting isn’t great in a lot of the pictures but you can still get an idea of where she was at that point in time.  The bacterial infection in Week 33 really set her back a lot.  She was showing so much improvement before that and her face at a year isn’t as good as it was before that point.

I don’t know if you can tell in the pictures but at about Week 51 her color really started to change.  She went from red, to pink, to pale white and back to her natural caramel skin tone on the areas that are healed (or healing).

I will keep updating this until my daughter is healed and she will be healed.  I truly believe that.

FOREHEAD:

Forehead 2-20-13Week 2 – You can’t tell but she is swollen here

Forehead 4-8-13Week 8

Forehead 4-30-13Week 12

Forehead 5-2-13Week 12 – Day 5 AM

Forehead 5-2-13 PMWeek 12- Day 5 PM

Forehead 5-5-13Week 13

No eyebrows 5-10-13Week 13

Forehead 5-11-13Week 13

Forehead 5-17-13Week 14 – Day 6

Forehead 5-18-13Week 14 – Day 7

No Eyebrows 6-9-13Week 17

Forehead 6-21-13Week 19

Forehead 6-22-13Week 19 (1 day after the picture above)

Forehead 7-6-13Week 21

Forehead 7-13-13Week 22

Forehead 7-21-13Week 24

Forehead 7-27-13Week 24

Forehead 8-15-13Week 27

Forehead 8-30-13Week 29

Forehead 9-22-13Week 32

Forehead 9-24-13Week 32

Forehead 9-25-13 2Week 32 – The white is zinc oxide cream

Forehead 9-26-13 2Week 33

Forehead 9-29-13Week 33

Forehead 10-12-13 2Week 34

Forehead 10-18-13Week 36

Forehead 11-21-13 2Week 41

Forehead 12-3-13Week 43 – Day 3

Forehead 12-6-13Week 43 – Day 6 Morning

Forehead 12-6-13 NightWeek 43 – Day 6 Evening

Forehead 12-8-13Week 44 – Day 1

Forehead 12-12-13Week 44 – Day 5

Forehead 12-14-13Week 44 – Day 7

Forehead 1-10-14Week 48

Forehead 1-15-14Week 49

Forehead 1-28-14Week 51

Forehead 2-5-14Week 52

Forehead 2-7-14Week 52

Forehead 2-11-14Week 53

Forehead 2-11-14Week 54

Forehead 2-21-14Week 54

NOSE AND MOUTH:

Nose and Mouth 2-20-13Week 2 – This is swollen for her

Nose and Chin 3-11-13 Close upWeek 5

Nose and Mouth 3-13-13Week 5

Nose and Mouth 3-16-13Week 5

Nose and Mouth 3-15-13 Week 6

Nose and Mouth 3-19-13Week 6

Nose and Mouth 3-29-13Week 7

Nose and Mouth 4-8-13Week 9 – Day 2

Nose and Mouth 4-10-13Week 9 – Day 4

Nose and Mouth 4-11-13Week 9 – Day 5

Nose and Mouth 4-13-13Week 9 – Day 7

Nose and Chin 4-16-13Week 10

Nose and Mouth 4-18-13Week 10

Nose and Mouth 4-21-13Week 11 – Day 1Nose and Mouth 4-30-13Week 12 – Day 3

Nose and Mouth 5-2-13Week 12 – Day 5 Am

Nose and Mouth 5-2-13 PMWeek 12 – Day 5 PM

Nose and Mouth 5-5-13Week 13 – Day 1

Nose and Mouth 5-6-13Week 13 – Day 2

Nose and Mouth 5-10-13Week 13 – Day 6

Nose and Mouth 5-11-13Week 13 – Day 7

Nose and Mouth 5-17-13Week 14 – Day 6

Nose and Mouth 5-18-13Week 14 – Day 7

Nose and Mouth 5-19-13Week 15 – Day 1

Nose and Mouth 5-20-13Week 15- Day 2

Nose and Mouth 5-21-13Week 15 – Day 3
Nose and Mouth 5-23-13Week 15 – Day 5

Nose and Mouth 5-24-13Week 15 – Day 6

Nose and Chin 5-26-13Week 16 – Day 1

Nose and Chin 5-28-13Week 16 – Day 3

Nose and Mouth 6-1-13Week 16 – Day 7

Nose and Mouth 6-6-13Week 17

Nose and Mouth 6-12-13Week 18

Nose and Mouth 6-22-13Week 19

Nose and Mouth 6-21-13Week 19

Nose and Mouth 7-6-13Week 21

Nose and Mouth 7-8-13Week 22

Nose and Mouth 7-13-13Week 22

Nose and Mouth 7-20-13Week 23

Nose and Mouth 7-26-13 Week 24

Nose and Mouth 8-15-13Week 27

Nose and Mouth 8-25-13Week 29 – Day 1

Nose and Mouth 8-30-13Week 29 – Day 6

Nose and Chin 9-8-13 Week 30

Nose and Mouth 9-24-13Week 33 – Day 3

Nose and Mouth 9-25-13 2 Week 33 – Day 4

Nose and Mouth 9-25-13 Week 33 – Day 5

Nose and Mouth 9-29-13 Week 33 – Day6

Nose and Mouth 10-4-13Week 34

Nose and Mouth 10-2-13Week 34

Nose and Mouth 10-11-13Week 35 – Day 6

Nose and Chin 10-12-13 2 Week 35 – Day 7

Nose and Mouth 10-16-13Week 36 – Day 4

Nose and Mouth 10-18-13Week 36 – Day 6

Nose and Mouth 10-20-13Week 37

Nose and Mouth 10-31-13Week 38 – Day 5

Nose and Mouth 11-1-13Week 38 – Day 6

Nose and Mouth 11-9-13Week 39

Nose and Mouth 11-14-13Week 40

Nose and Chin 11-15-13Week 40

Nose and Mouth 11-21-13Week 41

Nose and Mouth 11-30-13Week 42

Nose and Mouth 12-3-13Week 43Nose and Chin 12-6-13Week 43 – Day 6 AM

Nose and Chin 12-6-13 NightWeek 43 – Day 6 PM

Nose and Mouth 12-8-13Week 44 – Day 1

Nose and Mouth 12-12-13Week 44 – Day 5

Nose and Mouth 12-16-13Week 45

Nose and Mouth 1-10-14Week 48

Nose and Mouth 1-15-14Week 49

Nose and Mouth 1-28-14Week 51

Nose and Chin 2-5-14 2Week 51

Nose and Chin 2-7-14Week 52

Nose and Chin 2-11-14Week 53

Nose and Chin 2-21-14Week 54

NECK:

Neck 2-28-13Week 3

Neck 3-15-13Week 5

Neck 3-16-13Week 5

Neck 3-29-13Week 7

Neck 4-8-13Week 9

Neck 4-11-13Week 9

Neck 4-14-13Week 10

Neck 5-10-13Week 13

Neck 5-16-13Week 14

Neck 5-28-13Week 16

Neck 7-26-13Week 24

Neck 11-15-13Week 40

Neck 1-10-14  Week 48

Neck 1-10-14Week 48 Close Up

Neck 1-15-14Week 49

Neck 1-15-14Week 49 Close Up

Neck 1-28-14Week 51

Back of Neck 2-21-14Week 54

Neck 2-21-14Week 54

STOMACH:

Stomach 3-7-13Week 4 – Day 5

Stomach 3-8-13Week 4 – Day 6

Stomach 3-29-13Week 7

Stomach 4-5-13Week 8

Stomach 4-7-13Week 9

Stomach 4-16-13Week 10

Stomach 5-4-13Week 12 – Day 7 Chest and Stomach 5-4-13 PM Week 12 – Day 7

Chest and Stomach 5-4-13Week 12 – Day 7

Chest and Stomach 5-5-13Week 13 – Day 1

Stomach 5-5-13Week 13 – Day 1

Chest and Stomach 5-10-13Week 13 – Day 5

Chest and Stomach 5-11-13Week 13 – Day 7

Chest and Stomach 5-12-13Week 14 – Day 1

Chest and Stomach 5-14-13Week 14 – Day 3

Chest and Stomach 5-16-13Week 14 – Day 5

Stomach 5-16-13Week 14 – Day 5

Stomach 5-17-13Week 14 – Day 6

Stomach 7-7-13Week 22

Stomach 8-31-13Week 29

Stomach 10-15-13Week 35

Stomach 11-15-13Week 40

Chest and Stomach 11-21-13Week 41

Chest and Stomach 12-6-13Week 43

Chest and Stomach 1-10-14Week 48

Stomach 1-10-14Week 48

Chest and Stomach 1-15-14Week 49

Chest 1-28-14Week 51

Chest and Stomach 2-5-14Week 52

Chest and Stomach 2-11-14Week 53

Chest and Stomach 2-21-14Week 54

BACK:

Lower Back 3-7-13Week 4Back 3-7-13Week 4

Back 3-15-13 2Week 5

Back 3-24-13Week 7

Upper Back 3-29-13 Week 7

back 3-29-13Week 7

Back 4-7-13Week 9

Back 4-10-13Week 9 – Day 4

Back 4-11-13Week 9 – Day 5

Back 4-12-13Week 9 – Day 6

Back 4-14-13Week 10 – Day 1

Back 4-14-13 2Week 10 – Day 1

Back 4-16-13Week 10 – Day 3

Back 4-18-13Week 10 – Day 5

Back 4-21-13Week 11

Lower Back 5-4-13Week 12

Back 5-4-13Week 12Back 5-2-13Week 12

Back 5-5-13Week 13

Back 5-10-13Week 13

Back 5-12-13Week 14

Back 5-14-13Week 14

Back 5-16-13Week 14

Back 5-17-13Week 14

Upper Back 5-17-13Week 14

Back 5-21-13Week 15- Day 3

Back 5-25-13Week 15 – Day 7

Back 6-1-13Week 16

Back 6-3-13Week 17

Back 6-9-13Week 18 – Day 1

Back 6-15-13Week 18 – Day 7

Lower Back 6-15-13Week 18 – Day 7

Back 6-22-13Week 19

Back 704013Week 21

Back 7-7-13Week 22

Back 7-8-13Week 22 – Day 2

Back 7-9-13Week 22 – Day 3

Lower Back 7-20-13Week 23

Back 7-21-13Week 24

Back 8-17-13Week 27

Back 9-8-13Week 31

Back 9-26-13Week 33

Back 10-8-13Week 35 – Day 3

Back 10-11-13Week 35 – Day 6

Lower Back 10-18-13 Week 36

Back 10-18-13 Week 36

Back 10-15-13Week 36 – Day 3

Back 10-31-13Week 38

Back 11-5-13Week 39 – Day 3

Back 11-8-13Week 39 – Day 6

Lower Back 11-9-13Week 39 – Day 7

Back 11-15-13Week 40

Lower Back 11-15-13Week 40

Upper Back 11-15-13Week 40

Lower Back 11-17-13Week 41

Lower Back 11-21-13Week 41

Lower Back 11-30-13Week 42

Lower Back 11-27-13Week 42

Back 11-27-13Week 42 – Day 4

Back 11-30-13Week 42 – Day 7

Back 12-3-13Week 43 – Day 3

Back 12-6-13Week 43 – Day 6

Back 12-12-13Week 44

Back 12-31-13Week 47

Upper Back 1-10-14Week 48

Back 1-10-14Week 48

Lower Bal 1-10-14Lower Back – Week 48

Upper Back 1-15-14Week 49

Back 1-15-14Week 49

Back 1-28-14Week 51

Back 2-5-14Week 52 – Day 4

Lower Back 2-5-14Week 52 – Day 4

Back 2-8-14Week 52 – Day 7 Back 2-8-14 2Week 52 – Day 7

Back 2-11-14Week 53

Back 2-21-14Week 54

Lower Back 2-21-14Week 54

SHOULDERS:

Shoulder 3-7013Week 4

Shoulder 4-8-13Week 9

Shoulder 4-11-13Week 9

Shoulder 4-13-13Week 9

Shoulder 4-14-13Week 10

Upper Arm 5-23-13Week 15

Shoulder 7-13-13Week 22

Shoulder 11-5-13Week 39

Shoulder 11-15-13 2Week 40

Shoulder 11-15-15Week 40

Shoulder 11-17-13Week 41

Shoulder 11-21-13Week 40

Shoulder 11-27-13Week 42

Shoulder 12-12-13Week 44

Shoulders 12-31-13Week 47

Shoulder 1-10-14 2Week 48

Shoulder 1-10-14Week 48

Shoulder 1-15-14Week 49

Shoulder 2-7-14Week 52

Upper Arm and Shoulder 2-5-14Week 52

Shoulder 2-11-14Week 53

Shoulder 2-21-14Week 54

ARMS:

 

Arm 3-7-13Week 4 – Day 1

Shoulder 3-7-13 Armpit Week 4 – Day 5

Arm 3-10-13Week 5

Inner Elbow 3-15-13Week 5

Arm 3-24-13Week 7

Arm 3-30-13Week 7

Arm 4-11-13Week 9

Arm 4-11-13 2Week 9

Arm 4-21-13Week 11

Arm 4-21-13 innerWeek 11

Arm 5-2-13Week 12

Red Arm 5-5-13 2 Week 12

Arm - Inner 5-5-13Week 13

Arm 5-5-13 InnerWeek 13

Finger Prints on Arm 5-5-13Week 13 – That is from touching her skin – Not pressing hard

Inner Arm 5-10-13Week 13

Arms 5-10-13Week 13Arms 5-7-13Week 13

Arms 5-11-13Week 13

Elbow 5-5-13Week 13

Upper Arm 5-23-13Week 15

Inner Arm 5-28-13Week 16

Inner Arm 5-30-13Week 16

Inner Arm 6-1-13Week 16

Arm 6-3-13Week 17

Arms 6-6-13Week 17

Inner Arms 6-6-13Week 17

Arm and Wrist 6-21-13Week 19

Wrists 7-6-13Week 21

Arm 7-8-13Week 22

Arm 7-20-13Week 23

Wrists 7-26-13Week 24

Arm 7-22-13Week 24

Inner Arm 7-22-13Week24

Inner Arm 9-7-13 Week 30

Arm 9-7-13Week 30

Elbow 9-29-13Elbow Week 33

Arm 10-2-13 Week 34

Arms 10-31-13Week 38

Inner Arms 11-8-13Week 39

Arms 11-8-13Week 39

Arms 11-15-13Week 40

Arm 11-16-13Week 40

Arms 11-17-13Week 41

Arms 12-3-13Week 43

Inner Arm 1-10-14Week 48

Lower Arm 1-10-14 Week 48

Lower Arm 1-10-14 2Week 48

Arm 1-28-14Week 51

Arm 1-28-14 2Week 51

Inner Arm 1-28-14Week 51

Elbow 1-28-14Week 51

Inner Elbow 1-28-14Week 51 – Inner elbow

Arm 2-8-14Week 52

Arm 2-5-14Week 52

Arm 2-5-14 2Week 52

Upper Arm and Shoulder 2-5-14 2Week 52

Arm 2-11-14Week 53

Arm 2-21-14Week 54

Inner Elbow 2-21-14Week 54

HANDS & WRISTS:

hands 4-18-13Week 9

Wrist 4-10-13Week 9

Wrist 4-16-13Week 10

Hand 5-2-13Week 12

Hand 5-5-13Week 13

Wrists 5-11-13Week 13

Fingers 5-12-13Week 14

Hand 5-13-13Week 14

Hand 5-16-13Week 14

Wrist 5-16-13 2Week 14

Wrist 5-16-13Week 14

Wrist 5-19-13Week 15

Wrist 5-20-13Week 15

Wrist 5-24-13Week 15

Wrist 5-25-13Week 15

Wrist 5-28-13Week 16

Hand 6-19-13 Week 19

Wrist 6-19-13Week 19

Wrist 7-7-13Week 22

Hand 7-12-13Week 22

Hand 7-9-13Week 22

Wrist 7-12-13Week 22

Wrist 7-20-13 Week 23

Wrist 7-21-13week 23

Hand 7-22-13Week 24

Hand 8-31-13 2 Week 29

Hand 9-7-13 Week 30

Hand 9-24-13Week 33

Hand 9-28-13Week 33

Hand 9-28-13 2Week 33

Hand 10-2-13Week 34

Wrist 10-8-13Week 35

Hand 10-8-13Week 35

Hand 10-13-13 Week 35Hands 10-18-13Week 36

Wrists 10-18-13Week 36

Hand 10-15-13Week 36

Wrist 10-13-13Week 36

Wrists 11-1-13 Week 38

Wrists 10-31-13Week 38

Wrist 11-5-13Week 39

Hands 11-15-13Week 40

Wrist 11-30-13Week 42

Hands 12-8-13Week 44

Wrists 12-12-13 Week 44

Hands 12-12-13Week 44

Wrists 12-31-13Week 47

Hand 1-10-14Week 48

Hand 1-10-14Week 48

Wrist 1-10-14Week 48

Wrist 1-10-14 2Week 48

Hand 10-13-13Week 49

Hands 10-18-13Week 49

Hand 1-28-14Week 51

Hand 1-28-14 2Week 51

Wrist 1-28-14Week 51

Wrist 1-28-14 2Week 51

Wrist 2-5-14Week 52

Hand 2-5-14 Week 52

Hand 2-5-14 2Week 52

Wrist 2-7-14Week 52

Hand 2-8-14Week 52

Hand 2-11-14Week 53

Wrist 2-11-14Week 53

Wrist 2-11-14 2Week 53

Wrist 2-21-14Week 54

Hand 2-21-14Week 54

Hand 2-21-14Week 54

Wrist 2-21-14Week 54

Wrist 2-21-14Week 54

LYMPH NODES: I didn’t take a lot of pictures of the lymph nodes – Sorry.

Lymph Node 3-8-13Week 4

Lymph Node 3-8-13 2Week 4

Lymph Node 4-5-13Week 8

Lymph Node 5-4-13 2Week 12

Lymph Node 5-4-13Week 12

Lymph Nodes 11-17-13Week 41

Lymph Node 2-21-14Week 54

Lymph Node 2-21-14 2Week 54

LEGS:

Legs TSW Round 1 – before we knew about TSW

Knees 3-8-13Week 4

Knee 3-9-13 Week 4

Knees 3-10-13Week 5

Knee 3-10-13Week 5

Knee 3-10-13 2Week 5

Knee 3-12-13Week 5 (2 days after the above pictures)

Purple legs 3-15-13Week 5

Back of Knees 3-19-13Week 5

Leg 3-19-13 RightWeek 6

Back of Knees 3-19-13Week 6

Knees 3-22-13Week 7

Thigh 4-8-13Week 9

Leg 4-8-13Week 9

Knee 4-10-13Week 9

Knee 4-11-13Week 9

Thigh 4-11-13Week 9

Leg 4-11-13Week 9

Leg 4-10-13Week 9

Legs 4-12-13Week 9

Knee 4-16-13Week 10

Leg 4-16-13Week 10

Leg 4-16-13 2 Week 10

Legs 4-21-13Week 11

Leg 4-21-13Week 11

Knee 4-21-13Week 11

Tearing skin 4-28-13 2Back of Knee Week 11

Legs 5-4-13Week 12

Back of Legs 5-4-13Week 12

Knee 5-3-13Week 12

Back of Leg 5-2-13Week 12

Back of Knee 5-2-13Week 12

Lower Leg 5-5-13Week 13

Legs 5-7-13 Week 13

Legs 5-11-13Week 13

Back of Knees 5-14-13 Week 14

Back of Legs 5-14-13Week 14

Legs 5-14-13Week 14

Leg 5-16-13Week 14

Legs 5-17013Week 14

Leg 5-19-13 2

Knee 5-19-13Week 15

Lower Leg 5-19-13Week 15

Lower Legs 5-21-13Week 15

Lower Leg 5-23-13Week 15

Legs 5-21-13 Week 15

Thighs 5-21-13Week 15

Knees 5-26-13Week 16

Leg 5-28-13Week 16

Knees 6-2-13Week 17

Thighs 6-3-13Week 17

Thighs 6-6-13 Week 17

Leg 6-12-13Week 18

Thigh 6-19-13Week 19

Back of Calves 7-6-13Week 21

Thigh 7-12-13Week 22

Thighs 7-7-13Week 22

Back of Knees 7-6-13 Week 22

Thighs 7-13-13Week 22

Leg 7-21-13Week 24

Leg 9-6-13 Week 30

Knee 9-6-13Week 30

Legs 9-8-13Week 31

Knees 9-25-13Week 33

Knees 9-29-13Week 34

Back of Legs 10-15-13Week 35

Back of Knee 10-8-13 Week 35

Knees 10-12-13Week 35

Back of Knees 10-12-13Week 35

Back of Knees 10-15-13 Week 36

Legs 10-18-13Week 36

Legs 11-1-13Week 38

Legs 11-9-13Week 39

Thighs 11-9-13Week 39

Knee 11-8-13Week 39

Thighs 11-15-13Week 40

Knees 11-17-13Week 41

Knees 12-3-13Week 43

Legs 12-3-13Week 43

Lower Legs 12-6-13Week 43

Lower Legs 12-8-13Week 44

Thighs 12-8-13Week 44

Back of Thighs 12-12-13Week 44

Back of Legs 12-12-13Week 44

Thighs and Knees 12-12-13Week 44

Back of Thigh 12-31-13Week 47 – Back of Thigh

Thighs 12-31-13Week 47

Legs 12-31-13Week 47

Thighs 1-10-14Week 48

Legs 1-10-14Week 48

Thighs 1-15-14 Week 49

Legs 1-15-14Week 49

Back of Thigh 1-15-14Week 49 – Back of Thigh

Knees 1-15-14Week 49

Back of ankles 1-28-14Week 51

Thighs 1-28-14Week 51

Back of Legs 1-28-14Week 51

Thighs 2-5-14Week 52

Back of Legs 2-5-14Week 52

Lower Legs 2-5-14Week 52

Legs 2-8-14Week 52

Legs 2-11-14Week 53

Back of Legs 2-11-14Week 53

Back of Lower Legs 2-11-14Week 53

Legs 2-21-14Week 54

Back of Legs 2-21-14Week 54

FEET AND ANKLES:

Ankle 2-18-13Week 2

Ankle 3-9-13Week 4

imag1391.jpgWeek 5

Ankle 3-13-13Week 5

Ankle 3-29-13Ankle Week 7

Ankles and Feet 4-12-13Week 9

Ankles 4-10-13Week 9

Ankle 5-3-13Week 12

Foot 5-3-13Week 12

Foot 5-4-13Week 12

Ankle and Foot 5-5-13Week 12

Foot 5-5-13Week 13

Ankle and Foot 5-5-13Week 13

Foot 5-10-13Week 13

Feet 5-7-13Week 13

Ankle 5-12-13Week 14

Feet 5-13-13Week 14

Feet 5-14-13Week 14

Feet 5-17-13Week 14

Foot 5-17-13Week 14

Ankle 5-17-13Week 14

Ankle and Foot 5-19-13Week 15

Ankle and Foot 5-25-13 Week 15Ankle and Foot 5-23-13 Week 15Ankle and Foot 5-23-13 2Week 15

Ankle 5-24-13Week 15

Ankle and Foot 5-28-13Week 16

Ankle and Foot 6-2-13Week 17

Ankle 6-6-13Week 17

Ankle and Foot 6-6-13Week 17

Ankle 6-12-13Week 17

Ankle and Foot 6-9-13Week 18

Ankle and Foot 6-12-13Week 18

Foot 7-1-13 Week 20

Ankle and Foot 7-12-13Week 22

Foot 7-21-13Week 23

Foot 7-23-13 Week 23

Ankle and Foot 7-22-13 Week 24

Ankle and Foot 7-22-13 2Week 24

Foot 9-6-13 Week 30

Ankle and Foot 10-8-13Week 35

Ankle and Foot 11-8-13Week 39

Ankle 11-8-13Week 39

Ankle and Foot 11-15-13Week 40Ankle and Foot 11-14-13 Week 40

Ankle 11-15-13Week 40

Ankle 11-21-13Week 41Ankle and Foot 11-21-13Week 41

Feet and Ankles 11-27-13Week 42

Ankles and Feet 12-3-13Week 43

Ankles and Feet 12-6-13Week 43

Ankles 12-31-13Week 47

Ankles 1-10-14Week 48

Ankle 1-10-14Week 48 – Close up

Ankles and Feet 1-10-14Week 48

Feet 1-28-14Week 51

Feet 2-5-14Week 52 – Day 4

Feet 2-8-14 Week 52 – Day 7

Feet 2-8-14 - 2Week 52 – Day 7

Feet 2-11-14Week 53

Feet 2-21-14Week 54

POSTULES: I didn’t take as many pictures of these.  By month 9 she really wasn’t getting them anymore but early on she had tons of them.

Postule 3-15-13 Week 5

Postules 3-15-13 Close UpWeek 5

Postules 3-16-13Week 5

Postules 3-29-13Week 7

Postule 4-12-13Week 9

Postules 5-4-13Week 12

Posted in History, Photo History | Tagged , , , , | 4 Comments

TSW Months 10 and 11

I have been slacking since the holidays hit so it is time to get back on track and start posting updates.  The itch intensified at the beginning of month 10.  The first time, it was a few hours after a bath with dead sea salt and baking soda, so I don’t think that was it.  She was freaking out that she couldn’t take the itch.  I tried to calm her down but this time nothing I did helped.  She eventually seemed to calm herself down but it took me by surprise.  The holidays were coming, she was getting more frustrated, I wanted to help her and I just felt exhausted.  We have had a few episodes like this over the last couple of months.  The timing hasn’t been great but what can you do?  So, here is what has been going on the last 2 months.

My sister always comes to visit with my nephew’s sons for Thanksgiving.  The boys are close in age to my daughter so she loves to see them.  We go to Macy’s Thanksgiving Day Parade every year – rain or shine.  My sister and I have been going for over 20 years and when each of the kids hit 5 they could come with us.  Well, my daughter just couldn’t make it this year.  Honestly, it was so cold and more crowded than usual so it was probably good that she didn’t come.  I did miss her though and I am so sick of her missing out on things that she loves.

Snoopy Santa

Christmas came and went without any real drama.  She went ice skating for the first time since February.  She has had several sleep overs (all at our house).  She also went to an indoor trampoline sports center and had a blast.  Her 10th birthday was at the beginning of January.  It was a busy and fairly happy time.  At this point I can’t even remember what her skin was like, but I know it wasn’t great and the itch at night was horrible.  It is all a blur now.

She didn’t miss much school, which is good.  She had a bad cold and missed a couple days but only missed 1 or 2 other days because of her skin.  I should also mention that she has not used ANYTHING on her skin (below her neck) since sometime in month 9.  I will probably do a separate post on moisturizer.  She still uses white petroleum jelly on her face because it hurts when she doesn’t.

Sometimes I feel like this is never going to end.  I do see improvement in her skin but it is such a long daunting road.  If you are going through this with your child, try and focus on every tiny bit of improvement because it is so easy to forget about the progress and focus on how long this takes.  Here are some skin pictures.

Forehead Pictures – Big improvement from November to January on that right eye.  Also, the eyebrows are growing back but sometimes she rubs so hard that they break off.

Forehead 11-21-13 2  11-21-13

Forehead 12-6-13 12-6-13

Forehead 12-14-13 12-14-13

Forehead 1-10-14 1-10-14

Nose and Mouth – This is day to day.  We never know what to expect when she gets out of bed.

Nose and Chin 11-14-13 11-14-13Nose and Chin 11-30-13 11-30-13Nose and Chin 12-12-13 12-12-13Nose and Chin 1-10-141-10-14

Hands and Wrists – These are still problem areas but are soooooo much better than they were.  She no longer needs gloves.

Hands 12-12-13 12-12-13Hand 1-10-14 1-10-14Wrists 11-1-13 11-1-13Wrist 1-10-14 1-10-14Wrist 1-10-14 21-10-14

Neck – This is like her mouth area.  Some days it isn’t bad and other days it is awful.

Neck 11-15-13 11-15-13Neck 1-10-141-10-14

Arms – Huge improvement in her arms.  The top of her arms are so smooth and soft.  The lower part isn’t as smooth but it is so much better than it was.

Arm 11-16-13 11-16-13

Arm 1-10-141-10-14

Chest and Stomach – Another area where there is huge improvement.  It is very smooth until you get below the belly button.  Notice the difference in color from her neck and her chest.

Chest and Stomach 11-21-13 11-21-13Chest and Stomach 1-10-141-10-14

Back – Another area that has shown so much improvement.  The top of her back is beautiful – so soft.  There are days that it is a little dry but more often than not it is super smooth.  The lower back still sucks.

Back 11-21-13 11/21/13

Back 12-31-13 12/31/13

Lower Back 11-21-13 Lower Back 11/21/13

Lower Back 1-10-14Lower Back 1/10/14

Legs – Her thighs look great and her calves are improving a lot.  Her knees are still wrinkled but nothing like they were.

Thighs 12-31-13 12/31/13 Legs 12-31-13 12/31/13Legs 1-15-141/10/14

Ankles and Feet – Her ankles are still a trouble area but they have improved.  Her feet are much better.  She get the occasional cut when she scratches too much but they are basically very smooth.

Feet and Ankles 11-27-13 11/27/13Feet 1-10-141/10/14

So, onto month 12!  I can’t believe it is almost a year of this hell.  One day this will all be a bad memory.

Posted in History, TSW Months 10 & 11 | Tagged , , , , | 6 Comments

TSW Month 9

I realized that I never posted this.  She is actually at 11 1/2 months now but here is what I had for Month 9.

With month 9 came our favorite holiday – Halloween.  We LOVE dressing up and making fun costumes.  We love carving Jack-O-Lanterns and we love candy!!!!  This year our daughter wanted to be a centaur and since I am insane I decided that I would make it.  Who the hell has the time to do that when your child is healthy, let alone dealing with tsw.   I clearly have lost my mind.

The first week of Month 9 she wound up missing a day of school but it was only 1 so it wasn’t that bad.  Her face started out terrible again and has continued to give her problems.  We have tried so many things but nothing really seems to help.  There are days she doesn’t want anything on her skin and I really don’t push her.  If something looks really open and I worry about infection then I will treat that area but I tend to let her call the shots with the other areas since I have no way to know how it feels.

Forehead 10-12-13 2 Nose and Chin 10-12-13 2These are both from the very beginning of month 9.

Her hands and feet continue to be a problem but her arms and thighs are not really red anymore.  They are still super dry, especially behind the knees and in the elbows but there is definitely an improvement.

Hand 10-13-13

Hands 10-18-13Back of Legs 10-15-13

Back of Knees 10-12-13

The lower part of her stomach often has deep creases that are pretty painful.  Her stomach was actually very swollen in this picture so it doesn’t show how deep the creases go, but it was the best one I could get. Her chest is white and soft.

Stomach 10-15-13 2

Her lower back is always very dry and cracked but the top of her back is soft and white.

Lower Back 10-18-13Back 10-18-13

When I look at these pictures and realize that I consider this an improvement, it scares the shit out of me.  I can’t believe what she has been through.  I curse the pharmaceutical companies and the irresponsible doctors who act as their puppets.

Halloween came and she had a parade and party at school.  She had a great time but was worn out when we got home.  She said she was too tired to go trick-or-treating with her friends.  We went to a Halloween party that Saturday and she had fun but I could see she wasn’t feeling great.  We left early and she missed a birthday party the next day.  I hate how many events she has missed over the last 9 months.  I blocked her face in the picture below for her privacy.

Centaur

She seems to be pretty tired again, which is so disheartening.  I feel like she is sliding back in some ways.  I wonder if this is something that will cause permanent emotional damage.  She is so resilient and tries to hard to push through this all but it wears her down.  She still cries a lot some nights about how she hates her skin and the way she looks.  It breaks my heart every time.  She keeps it together while she is at school or with her friends but when she gets tired at night, it all comes out.  A friend of mine reminded me that those are coping skills.  I am amazed by this child every day.

Month 9 has ended with her feeling sick and missing another day of school after the long holiday weekend.  Her face was oozing and then drying up by night.  Next day oozy again – then dry at night, etc.  I just can’t wait for this hell to be over!

Posted in History, TSW Month 9 | Leave a comment

School or No School – Tough Decision

Should I keep my child in school while going through topical steroid withdrawal?  I don’t think there is a right or wrong answer.  The decision to pull your child out of school or keep them in school is a very difficult one.  Take the time and weigh your options.  Whatever you decide – you are right.  Every family and situation is different.  Do not listen to ANYONE who criticizes your decision.  There are critics for both sides so look inside yourself and go with what feels right for your family.

HOMESCHOOLING: Pulling your child out of school and homeschooling is an option for some.  It gives your child the chance to stay home and rest as much as is necessary.  If you are someone who has a lot of patience and you are in a situation to do this, go for it!  It is a wonderful opportunity to spend more time with your kid and allowing him/her to heal.  Don’t let people criticize you for keeping your child alienated or isolated.  They don’t live your life, so to hell with them!  A very good friend of mine always says that friends don’t judge.  I agree.  A real friend can have a difference of opinion with you without judging you.  If someone is judging you, they aren’t being a good friend to you so ignore them!  Some children are teased and bullied at school because of their appearance.  If that is the case and you feel it is best to keep your child at home to avoid that (or to avoid jail time when you kick the shit out of some snot nosed little bully), there are things that you will have to do to prepare.  Do some research and find out what your state requires.  I have no personal experience with homeschooling but I found this site that has tips on what you will need to do.  This is for the US.   How to Homeschool Your Children

STAYING HOME WITH YOUNGER CHILDREN: If you have a child that is in daycare, nursery school or PreK you are not required by law to home school.  You may choose to do it so that your child isn’t too far behind when they go to school but it isn’t necessary.  Again, this is not the situation I am in so I have no experience but I wouldn’t stress about your child falling behind.  Kids are like sponges and they will catch up when they are well enough to go to school.  At least that is my opinion.  The most important thing is to keep your child as comfortable and happy as you can.  You have enough to worry about.

KEEPING YOUR CHILD IN SCHOOL: Some children really want to go to school as much as possible.  Some parents want their kids to go to school as much as possible to preserve some sort of normalcy.  Some parents don’t have the option to stay home and home school their child.  It isn’t always possible to take a leave of absence from work to stay home with your sick kid.  Due to financial situations or not having the support of family or friends, some people have to send their children to school.  Whatever your reason is, know that your child will still miss some school because he/she will not be able to move some days.  The fact is that your child is sick and will have to stay home and rest sometimes.  Hopefully not too often.  In the US there is 504 Plan that will give your child special accommodations with his/her school.  I believe this was created for children with disabilities so that they would have the opportunity to go to school with everyone else.  Most schools require a simple letter from your pediatrician stating that your child will miss many days and may need extra time to complete assignments and take tests.  Your school should have a meeting with you after you send in the letter.  They should also send a tutor when your child misses school.  I believe that every state has different rules regarding how many hours of tutoring they provide.  Check online to see what you are entitled to.  We did not know anything about this last year and no one provided a tutor for the 23 days that my daughter missed.  I was not happy when I found out about that.  Neither was the school when they had to listen to me bitch about it.  If your school does not request a meeting after you provide the 504 letter, call them and insist that they address this.  Call the guidance office and ask what you are entitled to.  Do your research so you don’t get screwed out of days like we did. If you are working and can only stay with your child occasionally, please do not beat yourself up about it.  You are doing the best you can with the situation that you have been thrown in.  The fact that you are taking the time to read my boring blog tells me that you are a caring parent who wants to learn everything  you can about your child’s situation.  That makes you a great parent.  Don’t let guilt eat at you.  You made the right decision for your family.  This link explains the 504 Plan.  Protecting Students With Disabilities

OUR DECISION: As you probably figured out, we decided to keep our daughter in school.  Before coming to a decision my husband and I weighed our options and then spoke to our daughter to see how she felt about it.  She REALLY wanted to stay in school because she was so afraid that her friends were going to forget about her and she didn’t want to miss anything fun.  She is a very determined child and she tends to push herself way too much so I was more than a little concerned.  My husband felt very strongly that she should live as normal a life as possible.  I was leaning towards keeping her home simply because I wanted to protect her from the exhaustion that I could see setting in.  I was also afraid that I would tear the school up if anyone made fun of her.  Mama Bear is not pretty when someone fucks with her cub.  The 2 of them pleaded their cases and we let her stay in school with the condition that she would let us know if she was too tired to go.  She missed 23 days of school between February and June.  Those days she could barely lift her head in the morning.  Since this September she missed 13 days of school due to TSW.  10 of those days were all at once due to a bacterial infection that really knocked her on her ass.  We went into this thinking that we would play it by ear and if we needed to pull her out of school, we would.  For us this was the right decision.

My daughter has thrived socially and academically under these horrific conditions.  The children in her class are the most amazing children I have ever seen.  They all have shown concern, compassion and love that warms my heart.  They send her cards and texts and call her when she misses school.  No one has teased her at all.  There was one incident last year but it turned out to be nothing.  The rest of the kids in the school stared a lot last school year when this all began but that seems to have stopped.  The teachers and the Principal are wonderful and have bent over backwards to accommodate her.  We are currently having some issues with the school psychologist but I am pretty sure that we will get it under control.

There is no doubt that we made the right decision for our family, but this may not be the right decision for yours.  Good luck with whatever decision you make.

Posted in History, School or No School | 4 Comments

TSW -Month 8 – Roller Coaster!!!!!!!!

Month 8 of TSW has been a whirlwind.  It started out great and then she was slammed!  I guess it is to be expected but that doesn’t make it any less painful for her or for us to see.

We started the month with a trip to Disney World.  We had to cancel all our vacations earlier in the year because of tsw and were hoping that she would be ok for this one since she would be in month 8.  We were lucky and she was fine.  Our doctor recommended that we get a wheel chair for her so that she doesn’t over exert herself.  We tried to do without the wheel chair the first day and she was fine for a while but she got so overheated, started to sweat and got the crazy itchies.  All I could think was “FUCK!!!!  Why didn’t I listen to the doctor?”  Luckily I brought an emergency stash of antihistamines which helped once they kicked in.  We also took her scarf and soaked it in cold water and put it on her forehead and on the back of her neck to quickly cool her down.  Once she cooled down she felt a little better but wanted to go back to the room shortly after that.

The next day we got a wheel chair and a Guest Assistance Card and that helped a lot.  The Guest Assistance Card basically said that she needs a shaded area to wait.  For those of you that don’t know Disney World, they have Fast Pass lines.  Most of the people at Disney allowed her to go on those lines so that she didn’t have to wait long.  That was extremely helpful.  I don’t know how the hell we will ever go back and have to wait on lines!

It was brutally hot the whole week but she was such a trooper.  When we went to Hollywood Studios she did not want a wheel chair and she did fine.  It is much smaller than the other Disney parks so it was manageable.  The highlight of the trip (for me) was that she went in the pool!  She was super scared but she did it.  It stung at first but then she was fine.  I was so happy that I wanted to cry.  She missed swimming so much and it warmed my heart to see how happy she was.  She was going down the water slide and having a blast for over an hour.  Then the itch hit so we got out.

Swimming 2

Overall, the trip was a success.  She got to go on every ride she wanted to (she is a coaster fiend) and was finally tall enough for Aerosmith’s Rock ‘n’ Roller Coaster.  We stayed at Animal Kingdom Lodge, which she loves.  She swam and she had a great time.  Everything was great.

Bacterial infection hits! We were home 2 days and next thing you know she can barely get out of bed.  She didn’t have fever but she was exhausted.  I thought maybe she pushed herself too much but it was probably just a flare.  We have never really been able to tell what a flare is because she is always so raw and itchy but this was really bad.  She barely moved so she missed a bunch of school again.  She was sleeping about 15 hours a day and was so uncomfortable.  She could barely walk.  We carried her from her bed to the couch, to the bathroom and back to bed at night.  She kept saying that her skin hurt and that it felt like it was tearing open.  The only thing that helped was Motrin and sometimes it wore off way before it was time for her next dose.

Elbow 9-29-13Knees 9-25-13

It turned out she had a bacterial infection.  I wouldn’t have even taken her to the doctor because her body was doing a good job of fighting it.  I could see awful areas clearing with nice skin underneath but it went to her eye area and I didn’t want to play around with the eyes.  Be prepared these pictures are not pretty (especially the messy hair!).  Here is her eye area and forehead area.

Forehead 9-22-13 September 22nd not bad at all

Forehead 9-25-13 2September 25th – 3 days later her eye brows are oozing and crusting up.  The white is zinc oxide.

Forehead 9-25-13September 25th evening – it is clearing up without anything other than zinc oxide and coconut oil.

Forehead 9-26-13 2September 26th it is clearing but it is now raw from the crust cracking off.

Forehead 9-29-13September 29th before starting antibiotics

As you can see it was clearing up on it’s own but it started to clear on the eye brows and got closer to the eyes so we took her to the doctor.  It was a bacterial infection – No shit!  I hate antibiotics.  I truly believe that your body can fight off most infections without them.  BUT we really didn’t want to risk this moving closer to her eyes so we gave in and started her on antibiotics and boosted up her probiotics to counter act it.  Her doctor actually suggested it, but we had already planned on doing it.  It is nice to know that her doctor doesn’t take the antibiotics lightly.  

SIDE NOTE: Did you notice that she has some eyebrows growing back?  If they weren’t so crusty I would have counted them.  I never thought I would love body hair!!!!!!

Here are some pictures of the lower part of her face.  I swear her body fights this shit naturally.  It amazes me every time I look at the pictures.

Nose and Mouth 9-24-13 September 24th Not so pretty but the worst is yet to come.

Nose and Mouth 9-25-13 2 September 25th – What the hell?!?!

Nose and Mouth 9-25-13 September 25th evening – It is starting to go away.

Nose and Mouth 9-29-13September 29th – It is no longer yellow and crust and the skin that is peaking through looks very healthy.

I wish I had pictures from the days in between but she was not happy about me taking pictures.  The poor kid would not even look at herself in the mirror.  It broke my heart how sick and sad she was.

By the time we started the antibiotic her body was doing a great job of fighting it anyway.  I do have to admit that the pain went away after the antibiotics were started and her energy started to come back by the 3rd day.  Now we just had to get her back to school and caught up on her schoolwork.

SCHOOL: She started school after missing a total of 3 weeks.  Luckily her tutor is amazing and has really done a great job of keeping her somewhat caught up.  She was only able to have the tutor 1 out of the 3 weeks but she will continue to come until she gets caught up or they stop sending her.

For those of you in the US check with your state to see what you are entitled to.  We didn’t know that we were entitled to 1 hour of tutoring for every day that she misses.  She missed 23 days last year and we had no clue so we lost all that time.

END OF MONTH 8: We went apple picking and she was amazing.  She was exhausted afterwards and slept the whole way home but she climbed trees (got yelled at from the groundskeeper) and ran around with her friends and had a great time.  She even managed to make it through school for 1 full week but boy did it wear her out.

Posted in History, TSW Month 8 | Tagged , , | 6 Comments